When we alter our clothes to accommodate disabilities, that doesn't necessarily make them less historically accurate! Disabled people have always existed, and they probably used similar solutions to make their clothes work for them.
As a chronically ill very skinny person I feel so seen by what Bernadette said about wanting to cover up and not liking the sight of her limbs. I feel less alone and like I understand a little more why I feel the way I feel. I had never thought of it that way I thought I was just weird about my body
Me too. That felt SO validating to hear that someone else felt more comfortable covering up their arms or legs because they feel too skinny. Especially having had people point at my arms and go "LOOK HOW SKINNY HER ARMS ARE!" and having to wear toddler sized bracelets, I can get very uncomfortable showing my arms. I feel like they're too skinny and I don't like the comments I sometimes get.
Growing up as one of five kids and then frequenting cons and festivals with friends with disabilities, the number one practice we have is establishing a "home base." With larger cons and festivals it's a moving base (we plan renfaire ahead like we're going to spend approximately x amount of time in each "section") but it's just a space that we settle. So we'll walk in and establish home base and one person is always at home base, while everyone else explores. At renfaire home base is always at a "show" or theater area (I usually hang out at home base because I enjoy watching the shows) but it allows other members of the group to come back to home base to rest before continuing to explore. It just creates a safe space to come back to, that's common for all members of the party.
As a 62 year old seamstress with multiple disabilities, it’s refreshing to be a hearing this dialog. I’ve had to adapt for decades and always felt perhaps my contributions were not as meaningful as those who are more able bodied and minded. Thank you for bringing this important topic to light. ❤️
People with disabilities are so often considered by the larger world in relation to their ability to "contribute" to the economy and to society, and so it can feel that way in smaller communities too. Please know that anything you do that brings you joy is valid, no matter how it compares with anyone else's. We love all our sewing and costuming family, regardless of output, productivity, or supposed "perfection".
This comment is for Gilbert. Hope he sees it here or someone can relay it to him. A lot of online fabric shops will allow you to request samples. Sometimes free, often for a nominal fee. It's more common with sellers in North America, but even in the rest of the world distributors are often willing to accommodate you if you send them a polite email explaining why you would like to order some samples. That has helped me loads with being able to buy fabric confidently online. I have similar issues with fabric feel and never would have thought of requesting samples if someone hadn't suggested it to me. Especially now with all the shops being closed it's been an even bigger help than normal.
24:00 my brother has autism and he doesn't like clothes at all, never has. He only wears boxers while at home and was really difficult for my mom to dress as a child. He hates the feel of fleece and refuses to wear it, the same goes for tags in clothes. When he got his diagnosis we were so happy since we now know more about how and why he feels/behaves as he does since he has trouble communicating it himself.
SnappyDragon’s comment on participating in US Events needs to be blown skyhigh, and frankly the conditions she describes should be made something all reenactors stay aware of, and respond to, to hold the organisers responsible for creating equality. Ditto Gilbert’s stories.
"Emotional support human" is a thing I've always needed but never had a term for. Thank you for this panel, these dis/ability videos have given me a lot to think about.
My husband often helps me with anxiety triggers. I've used the term 'emotional support husband' to describe him more than once. The staff administering my last MRI seemed to understand the term and the necessity of his being in the test room with me
Same. I actually teared right up when Bernadette was talking about hers and the 'fear of being high maintenance'. There is so much I wish I could do, but I need someone to help me, and very few people don't make me feel like I'm putting them out. Even my family makes me feel that way. So I just don't do things. If only you could get a prescription for an emotional support human!
@@helent5114 Seriously! I'm so sorry your family treats you that way, that is not okay at all. I want there to be Emotional Support Training courses or something to show people . . . closest I've found is a few of Jessica Kellgren-Fozard's videos.
@@SnappyDragon thank you. I'm used to it now after 10 years but every now and then something happens to make it so obvious and it always hurts, no matter how much you tell yourself to ignore it. Classes would be great.! Thanks for the tip, I'll look her up
Thank you Miss SnappyDragon for having me and us on your channel! It was a pleasure visiting your lair and am grateful I got to speak about my experiences as as a deaf, balance impaired and chonically ill costumer!
So amazed to see this even discussed. I now realize that I love Edwardian clothes because they allow me to hide my scarred, mutilated, surgically traumatized body. A lifetime of dating men who made me feel ugly, unwanted, ignored, and unloved has led me to sew garments to hide behind. My latest goal is to sew a Medieval Kirtle so that I can hide every inch of me. Very enlightening. One really sad reality is getting dressed to the nines in a garment that took you weeks to make and, instead of “What a gorgeous gown!” you still only get “What’s wrong with your leg?” Thank you for this.
Adapting my sewing tools/space to my ADHD: I am practicing putting things away in their correct spot, by developing a system for myself that involves having very accessible and intuitive places for each item, requiring minimal effort to put away - open bins to dump things into, and a pull out keyboard tray for my most frequently used tools. Because I can push away back into the shelving it is less conducive to my habit of piling things on any available surface. ADHD often entails running out of motivation/interest in the project about 70-80% of the way through, and therefore cleaning up when you finish...haha. So I'm trying to make that as effortless as possible. Simply having to open a container to put something away can seem too arduous, so where I can avoid it, I don't use lids. I tend to have 5+ projects going on at time, and the way I've found to not have all of them on the table, making it impossible to find anything I set down, is to have a collection of empty bins that I can dump everything related to a project into in order to set it aside. But ultimately, I have 5 pairs of scissors (in addition to my fabric shears) in and around my sewing area so that I can lay hands on a pair without wasting time, and losing my train of thought, trying to figure out where I lost them last.
I love all this advice! It reminds me of a story I heard somewhere that boils down to a therapist advising a client that they didn't have to fit themselves into an "abled" definition of success or functioning, as long as their strategies worked for them.
@@Anne-iz5br And that's the funny thing. They're sound, logical strategies. Why the heck, being a fascinated consumer of organization and life hacks since the age of 10, did I not come across anyone suggesting these things until reading a book specifically on organization and household management strategies suited for ADHD people? I wasn't diagnosed, so I had no idea to go looking for them. Fortunately I had stumbled upon some of them on my own. The obsession with aesthetic closed bin, hide in pretty boxes, Marie Kondo make everything item individually visible within the drawer - YES!, at the expense of spending a LOT of time putting things away in a (meditative?) time consuming and exacting way - NO! Never going to happen, it's going to remain on the floor and my drawers will be empty... this is a strange aspirational kind of organization that I don't feel works for all that many people, neurotypical or otherwise.
Yes. I also have ADD - and organization is my BEST FRIEND. Having project bags so I can easily go from one project to another without having lost pieces keeps me going on everything.
Honestly, when V mentioned internalized ableism at using "chronic illness," I kind of felt that so hard. I have a laundry list of mental health issues like depression and anxiety that only worsened after I had my baby, ADHD, a slight asymmetry in my hip that causes pressure on my sciatic nerve which causes intense pain and mobility issues when it flares up, the beginning symptoms of potential RA, which my doctor is monitoring, and a thyroid disorder that causes me to gain weight, lose my hair, fatigue, joint inflammation, poor temperature control, and a laundry list of other issues. I could go into organ failure if I don't take my meds. It took me so long just to use the term chronically ill because it just never occurred to me that it wasn't supposed to be this hard just to function as a human being. It never occurred to me that it is something i have to consider at all times, which other people don't. I know this was rambling and long and way too much information, but this just made me feel so much less alone in the world and that my feelings and struggles are valid and real and I'm not being a baby for feeling them. So thank you for this.
Wow, that's a lot of us with scoliosis! I wonder if some of the costume interest is due to having to make or alter clothes to fit. Once we're there, it's not much of a leap to getting even more creative with clothing.
It's certainly possible! My into to sewing was modifying clothes for my height (I am tiny), and I feel like that draws in all sorts of people who aren't well served by the narrow range of sizes and shapes available in modern shops.
I have POTS, EDS, MCAD, 50° double scoliosis curve, sensory processing disorder, PTSD, depression & anxiety. Although many of those limit my daily functioning, sewing and historical clothing research IS something I can do and have fallen in love with. I now have a service dog, so I like to include her in costumes. I could relate to many of the issues the panelists talked about.
I didn't know there were autistic costumers / costubers! Thank you for being here, and Gilbert, thank you for showing that you don't have to wear costumes on a daily basis to be valid! I don't have an official diagnosis yet but I think I might be autistic. I'm only halfway through the video and already a lot of what the autistic panelists said resonated with me. Thank you ❤️
I'm so glad we may have helped you! I am about to offer a tip, but please know this is an unofficial non-medical tip: For seeking a neurodiverse diagnosis - if you take an online ASD "assessment quiz", it's not an official diagnosis or test, but usually you can print off the results and your answers for free (don't be fooled by companies asking you to pay). Then bring the printed sheet into your family doctor or psychiatrist and/or medical professional. Like I said, it's not a diagnosis in and of itself, but it can be helpful to doctors to speed up some preliminary questions. Also, take another one of ADHD, which has a LOT of shared symptoms.
I know Liz opened the panel with "not every term/symbol will be inclusive" but I do want it noted that (at least in the United States/Canada) the Deaf/hard of hearing community prefers those terms over "hearing impaired". Liz did very well moderating the panel and giving structure. Thank you for your time.
You're absolutely right. I am aware of that preference, and I can only apologize and blame the nerves of a live panel for failing to use the correct terms. In all honesty, I don't remember much of the panel! Thank you for bringing this to my attention and reminding me.
I loved that you included mental, autoimmune and hormonal illnesses (because there is still a lot of inclusion work to do there!!!!!) and the spoon theory.
Thank you! The set of people and issues represented were totally organically chosen, just people in the CosTube community who were interested. Perhaps I talk about it with more people because I have one, but invisible illnesses seem to be much more common than the public would have us believe.
It's great seeing this representation. My great grandmother until recently still knitted socks and gloves for me and her other great-grandchildren. Due to being 91 years old she now can't take care of herself due to seeing scary hallucinations. Back in the day she made carpets, sew dresses and knitted many things. In school we tried knitting and sewing which really made me appreciate her work and skill, seeing so many passionate people still into sewing today (when it's not the norm anymore and people discard clothing as trash every season) would make her happy 💖💕
I really hope you guys keep this Pannel up on RUclips, we really don't see that much representation out there, and this makes me feel so happy to see this. We need more videos like this! Thank you all for sharing
I love having snacks such as sports bars (either homemade or store bought, both do the job, one is cheaper the other is easier) around the house. That way I can have a quick food break without fully getting out of my project.
I have ADHD and anxiety but I've never thought of them as disabilities before. This panel enhanced my understanding of myself and disabilities in general. Thank you!!
As a creative with ADD, anxiety, and depression, I feel better knowing there are others out there that manage to do great things while managing disabilities.
Thank you all so much for making me feel seen. As a person with type-1 diabetes, asthma, borderline personality disorder, attention deficit disorder, scoliosis, anemia, eczema, post traumatic stress disorder, and debilitating anxiety (and only the first two diagnosed prior to adulthood), I often feel like I have to pretend. People think I'm lazy because I sleep a lot and usually don't have the energy to do much or go places. They think I'm a flake because I often cancel plans, or because I often have little-to-no memory of things (the latter because, unbeknownst to them, I was disassociating). People, in general, find me hard to deal with and I'm often, openly, described as a "bitch" because of the wild mood swings and obsessive compulsive tendencies that arise from my BPD and anxiety, or as a "slut" due to the hyper-sexuality that is also common with those issues. I was seen as "gifted" in school and struggled constantly with the double whammy of being judged by my peers for being weird, and by my parents and teachers for being "lazy" and for procrastinating, and generally for not getting as good of marks as they thought I should. I've spent most of my life feeling like I couldn't do anything right, would never be "enough." A lot of that had to do with not knowing what was "wrong" with me for so long, but even now I often feel that way because, even though I know all this, other people don't and the way they treat me makes me feel like a failure. Even the ones that do know often can't, or won't, deal with me because it's too much for them, but most people are completely ignorant to it all, excepting the Diabetes, as I usually make that known for my own safety. During this Covid crisis I've discovered that I'm better off when I don't HAVE to interact with other humans and have the freedom to manage my time as I please: I work when I feel like working, I eat when I"m hungry, I sleep when I'm tired, I wake up when my body says "wake up," and if I have a day where I just CAN'T with people, I DON'T. It's an ongoing struggle, particularly as mental health care isn't something I have access to anymore owing to my financial situation, so videos like this (*discussions* like this) really help me more than I can say. I also want to give a shout-out to the entire CosTube community for being a great boon to my mental health! I stumbled onto it's existence through Bernadette's "Mrs. Crocome" videos, and have been absolutely thrilled by the opportunity to learn so much from such wonderful people. YOU GUYS ROCK! 💜
I’m autistic, and dealing with chronic pain (sometimes severe) that as of yet I haven’t managed to get a definitive diagnosis for, and the associated depression and fatigue that comes from both autism struggles and pain. I still work a full time job, including some weekends, though on my bad days it’s mostly going through the motions in a room on my own whilst doped up on painkillers. I was considered a key worker in the current pandemic so have been at my workplace as normal since the lockdown began, but major changes to my hours, breaks and overall working patterns was very difficult to cope with. I look absolutely normal to most people so it’s hard not to overdo it trying to meet other people’s expectations. I enjoy sewing in my time off because I can make clothes I am comfortable in and like and am keeping a blog, but I can’t seem to do enough on my good times to have sufficient content to schedule for the bad. I get partway through mock-ups for a project then it gets waylaid for weeks until I get some days that I can face cutting fabric on the floor again (my home is too small for a big table to cut on). I unfortunately don’t have sufficient natural-fabric options in fabric shops here (they don’t even have cotton calico in my local shop, and almost everything is polyester-based), so have to buy online, but it means I buy lots and lots of swatches before buying. I keep them all in a folder along with information about it and where I bought it from.
Drew Samuels My dining table is the fold-out type, with a flap on both sides. It does well for cutting bodices and the like, but I still have to resort to the floor for cutting skirts. I’m working on an Edwardian straight-front corset just now, because the 1895 walking skirt mock-up has been unceremoniously dumped in a corner until I can face dealing with that again,
I have a folding cutting table, and yes, it's not quite big enough to do skirts easily even though I'm a very small person. It's definitely better trying to shift things around on the table than it is wrecking my body on the floor, though.
Thank you all again! This was a superb panel - it stands out not just for those of us interested in sewing/costuming, but as an outstanding discussion regarding disability life and discussion overall. The openness of the panelists was great, and the awareness this brings to how those of us with disabilities find ways to be part of the communities we are interested in is particularly special.
I have arthritis in my hands and wrists due to an autoimmune disease. The most helpful tools for me are compression gloves (I use Lions Brand), ergonomic tools, and scissors with a spring in them. I am always adjusting my tools and setup to try to make life easier. I also tend to start projects early and give myself grace if I can't make a deadline due to my disease. Please don't give up on your hobby due to a disability. Sometimes the right tools/setup can make all the difference. And please be nice to yourself because this world is tough enough without you beating yourself up over something you can't control.
Tools and setup make *such a difference*. @Retro Claude's video has some discussion of that, and I've gone from hating and messing-up my patterning and cutting-out, to loving it now that I have a table at a height that doesn't hurt my shoulders.
Evelyn Rojas So true! I am always so self-conscious of my gloves because I have to wear them at work and in my college classes. However the more I wear them, the more people tell me about their disabilities and struggles. While we still don’t know what exactly is causing my arthritis and other health problems beyond it is autoimmune, it is comforting to know that I am not the only struggling with chronic illness.
Chanel McCoy They are my go to aid. I have a pair for work, school, and my craft room. I get them from Amazon Prime for about $10 per pair. I like the Lion Brand because they are fingerless but definitely experiment to find a pair that works for you. Here is the link: www.amazon.com/Lion-Brand-Yarn-400-5-1202-Stress/dp/B003W0ITBM/ref=asc_df_B003W0ITBM/?tag=hyprod-20&linkCode=df0&hvadid=198074277282&hvpos=&hvnetw=g&hvrand=4599648561591679577&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9022360&hvtargid=pla-385832050726&psc=1
Thank you for support of my disabilities! I call it what it is. Pain is a normal part of my daily life. I find my work and crafts a wonderful distraction. At times pain is so severe I cannot focus, only cry. But I’m 62 and just keep on making myself do as much as possible! It does give me great satisfaction!!
Thank you for a lovely discussion. Had the panel been smaller so much information would have been lost. I felt you handled the challenge of being sure all voices had a chance to speak well
I can’t believe on a disability panel I didn’t want to take up enough space to share my whole laundry list of issues 😂 Anyway I just wanted to say thanks again V for hosting us, and Liz for modding!!!
Juul, I am so proud of you. I know how uncomfy you feel when you have to talk. Well done!!!! I can so relate to a lot of things that were mentioned, thank you for this panel.
Thank you all for sharing with us,as a disabled mum with a disabled daughter it's lovely to meet you all and yes support human s are a great help and please be that person.
I totally felt the comment about natural selection trying to get you. In my soul kind of feels. I'm new to this community and I'm so thankful to have found a place where I can be anachronistic trash and fit in! I have Lupus, Fibro, Thyroid crap, Bipolar disorder and massive anxiety. This panel has barely started and I already feel seen. Thank you for that. Okay, back to my pocket embroidery.
Sometimes, it honestly feels like life is just a process of accruing an increasing collection of disabilities until we finally pass away! 🤦🏻♀️😅 Like some kind of bizarre bingo... It's a bit hard too when you have siblings who've managed to dodge all those genetic bullets - sometimes can't help feeling "Why me??" But the sense of solidarity and mutual support which exists in panels & online communities like this is an awesome thing to find...
Huge thank you for this discussion! As a recent mobility aid user, my perspective has greatly shifted on considering and interacting with the world. It is a wonderful resource to hear on others experiences!
This was probably the most important video for me of the whole CoCoVid! Many thanks to all the lovely people on the panel. You are all kinds of gorgeous!
How great is this - I sew from my bed, as spend so much time in it so sewing machine on the overbed table and been wondering if I should bother with costuming, I have only been sewing two years, used to be a knitter but cannot do it anymore and was going mad not creating so tried sewing and found as its not repetitive like knitting pain levels are not so debilitating and I love it. I have felt so much outside the world for so long due to my health conditions - MS, ME/CFS, Fibro and now diabetes - as not being able to turn up to places regularly always meant any groups I joined I was asked to leave so I admit I have been rather lonely sitting here in my bedroom but since taking up sewing even though not made friends as don't really interact as been nervous that people will judge me and see me as unreliable and useless as its been my experience for past 20 years in the normal world. I am drawn to early medieval and late regency as I tend to overheat and not worn anything with sleeves ( but adore kirtles) for the past 30 years ( some hormonal problem which I was assured would go at menopause but didn't). I am now 64 and if I have mentioned my age and health limitations ( on ordinary sewing groups not costuming ones ) I have been asked why am I even considering costuming aI should just should to stick to everyday clothes, undies, etc that I do wear ( I since starting to sew have not bought or worn anything I did not make except bras, not attempted them yet but even made a coat for when I do get out) I will never get anywhere to wear them plus being rather big in size but can if I work hard to get out sometimes, like my sons wedding a year ago today and I wore a silk and lace dress I made for it. Just watching and listening to you all makes me less lonely even if I never interact with anyone in the community, I follow many of you on here and on Instagram - I am #sewingfrommybed and you have all, in fact all the costume community, share so much and slowly am learning and am ready to have a go at my first costume - a regency ( Jane Austin time style) dress and underpinnings, not sure if they will be ok on me or not. It thrills me to know that younger people will not need to have the life I have had but can be part of something that is outside their health conditions. For me, it's too late but you wonderful people will ensure no one will be left out. Thank you all xxxx
Thank you so much for this. I run into a lot of physical issues due to my lymphedema (among other issues). I have a hard time walking and standing for a long time. I've felt like I was the only person in the historical sewing world with issues. Thank you again for helping me feel not so singular.
This was so amazing! As someone on the autism spectrum I often find it difficult to be a part of a community and this video was so nice to watch. I need to remember that I am not alone with how I feel and I should just get myself out there in whatever form I can! Thanks
I just really appreciate how the chat was used to provide caption-like information and increased the capacity of viewership to include people who are deaf and hard of hearing. Basically, costube is full of cool people who are kind
I'm so upset that I missed this Livestream! I'm Latinx with mental health diagnoses as well as a new path in diagnosing an autoimmune disorder. Growing up, mental health was so faux pas that I didn't get the help I needed until college, which resulted in a lot of manic and depressive episodes. Add that on top of being a goth in a family from the Bronx that is most definitely not open to such differences, dressing how i wanted was a stance against what was expected of me. Now that I'm more mature, medicated, and slightly more comfortable with my preferences, I'm happy to have found this community.
This was my favorite panel of cocovid by a long shot! As someone who lives with several physical and mental disabilities, I loved hearing so many of my struggles echoed by people experiencing the same thing. For me, making my own clothes has been so empowering, and I’m so grateful to find so many content creators to inspire and uplift me throughout this process!
Thank you so much for doing this! I’m legally blind and, although I don’t know how to sew yet, I do crochet and am very interested in learning how to hand sew. I could relate to a lot of what was said, especially surrounding attending events when you can’t drive, and having to plan for things that most people don’t have to worry about. Thanks so much for sharing and making me feel less alone.
We're so glad you could join us. We didn't have any visually challenged or blind folks on the panel and so our understanding of necessary accommodations for that were limited, but I hope our voices were clear at least. I think learning to hand sew would be a great idea! I can tell you that way more than my eyes, so much of my hand sewing depends on feeling. I depend on my fingers to detect how to bend the fabric and make the needle behave. I think you would do wonderfully.
@@LizCapism yes, you all sounded great! I was sad to hear that Zoom isn't very accessible for the hearing impaired. It works very well with screen readers for the visually impaired. Very sad. Thanks so much for your thoughts on hand sewing, too! My grandmother tried to teach me on a machine and I just never took to it. I agree that the more tactile nature of hand sewing will make it much more enjoyable.
I am so glad I stumbled onto this. I have a hidden disability, ad I'm a convention-goer. I'm not much of a costumer, but I have been developing an interest in disability and conventions for about 2 years now. I'm on the Concellation group and looking at ways to get my local conventions to be more aware of people with disabilities, to provide better access for us, and to have content that is more inclusive. A costuming panel would be an amazing idea. As an SCA girl from a ways back, I also appreciate the info on adaptations in making the clothing. The SCA in particular becomes extremely picky about 'period' construction as you become more advanced and participate in the arts and sciences competitions. I also have those inflammation and joint issues, and making even a t-tunic w/ strictly historical methods would leave me a wreck.
So upset I missed this live. Un/fortunately have a full time job. I'm so glad you all came together to discuss this topic. I'm new to the costume scene and I have been struggling with my own hardships, I really needed this video. Thank you.
Thank you so much for this. I am a teacher of the visually impaired. I have spent time working to make Living History experiences of a variety of time periods accessible to a wider range of learners. I have used creative activities, experimental archeology, and role-play/costuming as teaching methods for many years. Many of the students I have worked with have multiple challenges. And many of those students are very young and just beginning to develop self-advocacy skills. I so appreciate your frank communication about how each of you works your way through the world. My young students often struggle to articulate their frustrations and needs and I sometimes have to guess what a hold up is in order to help them work through it. Your specific statements about how you problem solve and how you feel about it have opened my eyes to better ways to communicate and help. I plan on sharing this video with my older students. It is so important for them to see representation in EVERY aspect of life-, especially creative endeavors. There is such a drive to fly the " Despite ( fill in the blank) they got straight A's." battle flag that their emotional health falls by the wayside. I appreciate the panel's openness about feeling down and frustrated and working through it as best as possible. Your commentary about dealing with "funny looks" is so valuable in letting people know they are not alone. It is so clear that each of you has used your passion for costuming as a way to successfully manage emotional health and celebrate your talents. And, it is so important for everyone, but especially for young people, to see that having help to achieve large and small goals- even ones that are about fun- is just part of the human experience and nothing to feel strange about. This panel discussion is so valuable.
Sid - I really am grateful for people like you who work to educate children! What excellent and hard work! If you're not already familiar with people like Cheyney McKnight (NotYourMommasHistory) or Daryian Kelton (TheRealDariyanKelton) they are amazing historical interpreters (among many). Cheyney in particular works hard to make her historical interpreting and work in living history museums accessible to all. You should really see what she has to offer if you haven't already.
Thank you, thank you, thank you all for this panel! I am a very sensitive Type 1 diabetic, so very excited to hear from another diabetic costumer. This does affect clothing choices. I need to be able to check blood sugars and take frequent injections. I have a continuous glucose monitor now, which is attached to my belly 24/7. I have to avoid anything that rubs against it, or restricts it. I also need to be able to inject insulin, which requires easy access to my injection sites, usually my belly or thighs. As a youth I was tall and thin, so found it necessary to make my own clothes if I wanted anything to fit. Now I am 69 years old, and “Stout.” Still need to make my own clothes, or alter other clothes to make them fit. My hypersensitivity is an asset as a stitcher, as many of you can probably relate. I choose projects based on the texture of fabric, as well as color and print. I have a unique and unpredictable wake/sleep cycle, so am glad to be able to work from home to accommodate fatigue, working when I have the energy, resting when I don’t. I am an expert at ergonomics, having worked for several years in sewing factories (in the 1970s) and learning how to make myself comfortable and avoid pain when sewing for extended periods of time. I’ve also worked for many years as a licensed massage therapist, so understand about the uniqueness of human bodies. Everybody is different! Yes! I celebrate all of you with deepest gratitude.
Thank you for making the self-gaslighting comment. This is something I've definitely struggled with but didn't think about it in those terms until you mentioned it.
I personally didn't either until I saw a graphic about it floating around Instagram a few weeks ago. It seems to have sparked a lot of good discussion and introspection!
There was also a moment in a pre-panel meeting we all had where one of us asked the group: How many of you have, because of your illnesses or related co-morbidities, have thought you had Covid but then tested negative? ALL OF US RAISED OUR HANDS. It's so easy for us to feel like we're lying to ourselves about how poorly we can sometimes feel, but at the same time we also know that we're ill... it was an interesting revelation.
@@LizCapism Oh yes. My anxiety definitely had me thinking twice about the shortness of breath and chest tightness. Thankfully I was able to calm down and those symptoms went away pretty quickly.
I like listening to this, I have rheumatoid arthritis which affects my ability to use my hands or even walk (knees), especially on sudden cold days. And it's mostly invisible too, even though I've had it since I was 16, also have blood sugar issues, I start quaking when I miss a meal. so it's great to hear that people can still manage to get things done, regardless of the limitations and frustrations. Thank you all for sharing. I wish I had an emotional support human, but unfortunately I am not friends with anyone who shares most of my interests. I tend to be the emotional support human for my friends since I like just about everything except comedy films based on stupidity (it makes me rage rather than laugh) and horror (keep tricking myself that I'm ready to watch the horror scifi without getting scared and nope, nope, nope, I will still hide behind the popcorn XD)
Thank you so much for this. I take my hat off to this group. I cant say how helpful this video is. I have tears in my eyes knowing that it is posible to follow this path regardless the disabilities. Thank you. I will be following everyone.
As someone w multiple mental health illnesses I've at times thought of myself as disabled. When I first started watching this I was surprised when they started saying they their disability was of a mental health illness. Thank you for including mental health illness in this discussion
Thank you for this discussion! I hope the spirit of inclusiveness in organization of public events will soon find reflection as specific practical steps, like introducing "emotional support buddy system" or rearranging the schedule with enough time between workshops for people to collect themselves and manage transitions better, etc. I do realize there's not enough time in the panel to cover every issue, but it did feel like the specific challenges of being a content creator ["with a disability"] could have been addressed in more depth. I am certain many ADHD costumers (myself included) have been very reluctant to start a channel for fear of yet another failure due to not being able to: a) sustain a regular posting schedule for any length of time, because it involves planning and executing a million steps totally unrelated to creating and talking about costumes; b) respond to viewers' comments on a regular basis, and c) have to constantly be engaged and keep track of YT, FB and IG - that seems to be a requirement if one wants to reach more than a handful of people. Managing social media "properly" seems exhausting, especially when one feels that they swim against the current as it is every single day without a "supportive human" nearby. It would have been great to hear in more detail how the panelists handle those specific challenges - perhaps next year?
I was going to write you a comment about this but I have a lot to say... So I'll make a video and post it this month. Working with ADD is hard, but manageable. It really comes down to understand how you work. But again, I have a lot to say about this and will make a video.
I have hypermobility and am in the process of being tested for HEDs. I found this really interesting I have only just started sewing historical dress but have been sewing for about 6 years. I have found that fatigue and pain caused the greatest problems. Thank you for the amazing videos
This is so wonderful and it's amazing to feel seen and accepted, I wish all communities on youtube were as open and friendly as the costuming community- as someone with autism, mental health problems and chronic pain and fatigue I often feel as though I can't achieve what others can so it's amazing to see others showing thier journey, it is very much appreciated and is inspiring (not in a condescending *all disabled people are inspiring* way but as in I take inspiration from everyone's experiences with difficulties similar to mine) I'm hoping I am able to delve into costuming and historical sewing more in the future 🤞
Yes! Please delve! There are so many excellent beginner projects that involve almost no previous skills, or extra equipment. You CAN do it. We are here for you.
While writing this response I'm at roughly 50 minutes into the posted livestream. And on top of that almost 5 months later since posting. But I do still want to share my thoughts and experience on the subject. Ever since I was a young girl I have been atrackted to the style of the 1950, at that age I was too young to voice my opinion and preferences clearly so I was mostly dressed as a "standard" fashion of the eighties and nineties. It took me until the early 21st century to start dressing in more of my preffered style. And by then I had also had learned more about the late 19th and early 20th century style and found that very attractive too. I learned to sew and knit etc already at a very young age so as a 16/17 year old I was starting to sew my own clothes but had a hard time finding patterns that would "fit the bill" enough to my liking. And so with a little help from my mom I also started to adapt patterns to my liking and combined them with some contempary clothing that looked like a good match to become not too different from my own agegroup. Mind you there wasn't as much information out there like there is nowadays and my internettime was still limited since DSL and the likes where not there yet either. Nowadays I'm completely bedridden due to a combination of 3 mayor problems, 2 caused by a DNA defects: one which gives me the wrong tension in my muscles and the other has to do with making faulthy collagen cells in every single celltype in my body but is most annoying in my joints that dislocate easilly. Then at age 7 I also developed a auto-immune disease that affects my different nerve systems and causes 24/7 extreme pain which started in just my left foot and ankle but has gradually spread to every single millimetre of my body. The DNA defect that causes my muscle to have the wrong tension is what has made me bedridden, I'm severly deformed in my joints and have an S-type scoliosis from it as well. Historic fashion is still a love of mine but I'm no longer able to sew for even an hour a month or so. Besides that would fitting clothing that have no stretch at all be really hard since I already need help getting dressed, I can't stand or sit up without help and non-stretch materials would cause more creasing on my back (which is what I lay on all day, every day) and when the smallest crease gives an insane amount of extra pain, it's simply not possible anymore. I still hate to buy any modern looking clothing and am fortunate with a mother that can still sew me shirts and so on the way I like them. She also knows how soft a fabric will need to be for me to be able to wear it and always looks for fabrics with a high natural fiber content and just enough stretch. Besides having 24/7 pain I also sweat 24/7 no matter what the temperature is. And cotton, wool, linnen, silk and the occasional viscose are the best at keeping my skin dry. We tend to use cotton and viscose mostly for summer since a stretching linnen would still crease to much beneath my body and is usually not woven smooth enough as well. And heavier cotton and viscose or light weight wool for winter garments. I don't get to go outside a lot so I also don't need really warm clothing. Knitting is a hobby I still can perform and for knitting socks I tend to use yarns that are pure wool since they don't go into shoes and I don't walk or stand on them. For sweaters I also go with all natural fibers, be it cotton, wool or silk or a blend of those fibers. Since knitwear is stretching on its own I find that I don't need to adapt patterns most of the time. Only the heels in socks which I knit less angled as both my feet are pointed down and turning to inwards. Every type of knitted heel has been adaptable so far and I'm also not afraid to use a pattern as an idea to just knit what I truly need, both in socks as well as sweaters and everything besides that. Being handy with hands has been important all my life in making and adapting clothing to fit my wishes as well as the needs of my body. I'm forever gratefull to both my mother and maternal grandmother for teaching me all those skills at such an early age!
I am so glad this panel exists, and that you all made such an effort to make it as inclusive and accessible as possible. Thank you! Disability has long impacted how much sewing/making I can do but only recently has started affecting how I do those things. I have found myself avoiding making things because it’s so much harder than it used to be (and just binge watching costube). Cocovid has inspired me to make some accommodations in my sewing setup so that I can still create and maybe it will be a little easier.
This is amazing video thank you all so much for speaking about disabilities i have adhd, ocd, bipolar, anxiety and functional neurological disorder and i loved watching you all and i think it is important to see that we have different things we deal with but all in all we are humans and i love that you all talk about "emotional support human" because it is so important to have them around you.
This was so nice to see. I have Hyper Mobile Ehlers Danlos Syndrome. I am trying to learn to sew but my hands hurt constantly and are pretty shaky, so I’m having a hard time actually doing any projects.
I have adhd and diabetes and I can hyper focus and forget to take care of myself...so I use a timer as well. It is one of the best things I have ever implemented into my crafting life
This was such a delightful, insightful discussion and I'm so glad that I was able to see it (and that I'll be able to return to it in the future). Thank you! So much!!
I know I'm a bit late to this party, but just wanted to say a massive thankyou for this discussion, it's very nice to know there are other historical clothing enthusiasts with a wide range of challenges are out there.
I have fibromyalgia, and no one fully understands the issues it comes with. and to say it feels disheartening is an understatement. They all just see it as an excuse and call me being lazy or too high maintenance. That I need to "get stronger" as if I can miraculously build a tolerance and become "normal" and less of a burden to deal with. I have fatigue so I rely on coffee to keep me awake during the day but I get made fun of for being an "addict". I cant tolerate extreme temperatures so I get teased at for being "too sensitive" and a whiner. My muscles and joints hurt and standing up/walking for long periods of time takes a toll on my body, but again people call me lazy for sitting all the time, unfit, that I need to "get out more" or exercise more. Again to build a tolerance and become "normal/standard". I would prefer to not work jobs that require me to be on my feet 6+ hours straight, but since I don't "look sick" getting any disability accommodations or applying for disability would be an uphill battle. So I just suffer in silence and try to trudge through my life. Hoping I will reach a point in my life where I can have more access to accessibility accommodations. And stop being treated as a lazy potato when I honestly try my hardest. And feel like crap I can't function as a "normal" human being.
I feel your pain, literally. The people around you need to sort out their perspective and understanding-- feel free to shove this video in front of them if it might help.
Ouch... Relating so hard right now!! I think the lack of clear medical research results on fibro (until extremely recently) has really made this issue worse? Because the causes and mechanism weren't known, it's led to some pretty ingrained social misconceptions of this condition as being either hypochondria, faked for attention, or just laziness. Much the same problem seems to crop up with many other chronic pain/fatigue or mental health conditions too, where people font understand and so decide to just dismiss...? Sometimes it feels like invisible disabilities are almost harder to operate with than visible ones, because many people are less accepting of/credulous towards mental/neurological damage than they are of clear physical impairment? We do have a certain level of 'passing privilege' if we mask successfully, so there's less of the intentional microaggressions. But having to explain what's wrong then often gets treated as complaining, seeking attention, or just plain making things up. I really really hope that the new results proving the biomedical causation of fibro may gradually help erode some of those social prejudices, as it becomes more understood? But I guess we just have to accept that it will take time, and in the meantime continue to provide as much support, encouragement and validation for each other as we can, as a spoonie community. Thank goodness for the internet, which lets such people find they are not alone! 🤍
Most of us are pretty exhausted from this weekend, but I feel I can speak for everyone when we say THANK YOU. You are what is delightful. This wouldn't have been possible without all of you watching.
As a costumer who uses a electric cart and oxygen I have had the joy of costuming on stage at World Science Fiction Cons and at Costume Cons with the International Costumers Guild. I found that this was the first time in my life that I could express my art with fellow artists. This is a good panel to do. Thank you
it took me ages to pluck up the courage to ask if I could do costuming in my wheelchair - I looked into getting period wheelchairs but it didn't work for my legs.... My hands arms are also affected as is my eyesight - so I struggle - really pleased to see this
I read something recently about how overzealously judge the "historical accuracy" of their fellow costumers are often reinforcing structural prejudices like racism, and I think that can apply to ableism as well. You are absolutely welcome in the costuming world, and we are fortunate to have you.
@@SnappyDragon I have just asked different organisers if I am welcome at their events - everyone has said yes so far - I was really surprised as I thought it would be better to have the correct wheelchair for the time - but people appreciate it just isn't possible - I would if I could but they allow that I can't - maybe one day I might find them -you never know....
@@clarewilliams5907 I don't think it's fair of any event to expect someone to sacrifice/modify their mobility aids for "historical accuracy", it's pretty blatant ableism. That said, I can absolutely see one of the events I participate in expecting that from cast members and it frustrates me so much. I can see "costuming" one's mobility aid turning into a really fun project if it's something they can and choose to do, but it should be up to them, not anyone else.
I'm so glad you've been well received by the events you've contacted! If you are ever told by anyone that you cannot attend an event because of a mobility aid, call upon your new community of fierce costuming friends and we will gladly manage them. (Snappy Dragon will chomp them, and then the rest of us will pop them in a cauldron for a delightful little ableist stew!) Or... more realistically, save the emails and messages and present them to your local disability/human rights advocacy group. It's not just about attending a party in a nice costume, it's about your right to participate in the world.
I miss having a cat, unfortunately, we’re not willing to pay the extra 100$ a month and the 250$ security deposit on pets to get one right now. We’re saving the money and will probably just buy a house and get pets then!
RUclips is planning on getting rid of community captions. Is there any way the costube community could get behind the campaign to stop it from happening?
Gigi Ososki We have noticed that, but thanks for bringing it to our attention 💛A petition for this has been shared among us, we are all a little busy at the moment but I will personally make sure to remind everybody once more, once the weekend is over!
I've already signed the petition, and I think all of us agree with it-- we may just need a moment to breathe after CoCoVid before calling our platform to account.
Thanks so much for caring about this. Many of us got this news smack in the middle of CoCoVid, which for many videos will rely on the community contributions to get captions uploaded by our live transcriptionists and interpreters. It is so upsetting to us and I can't speak for the community as a whole, but I am very willing to raise heck for it.
After finding the support groups for one of my disabilities to be more negative than I felt was helpful, I began a FB group for those of us who historybound with disabilities, if anyone would care to join. We can share our mutual interests, hacks, successes, stresses, etc. It's called 'A Fellowship of Historybounding Spoonies.'
Hi, I’m autistic in such a way that it makes attending events impossible. Too much noise, too much social rejection. I love costube for this reason. It’s similar to being social. I absolutely love Noelle’s chatty vlog style videos, she helps me to feel leas isolated
I really enjoyed this in broadening my understanding and knowledge of other people with dis/abilities. Also I have been fighting admitting that I do need help and need to accept that I do have some disabilities. I always think I'm not struggling enough to say I'm disabled. Also thank you to @Lizcapism for bringing some representation for BPD it's something I struggle with and don't talk about.
I also struggle with claiming that term "disabled", I think it's extra hard for those of us with invisible conditions and/or who are good at "faking it". We're glad you could join us!
Among autistic people, “faking it” is often referred to as “masking”, or sometimes “camouflaging”, and having to mask too much is extremely draining and frequently leads to burnout.
Connie! Thanks so much for your comment. I didn't talk much about it in the panel because my BPD doesn't usually directly affect my sewing experience, and as moderator I wanted to step back and let others speak, but I'm glad you identified regardless. My ADHD was only diagnosed a couple months ago and I have been struggling with imposter syndrome in called myself "neurodivergent", despite the fact that doctors have confirmed it. What I can say for certain is that help is something you deserve. We're so happy to have you here. :)
Awesome subthread! Tackling the shift in personal identity that comes with moving to identifying as disabled (rather than just somebody who's living with some issues) is something I can relate to hard. Don't know if it's the same for everyone, but it felt like a grieving process of sorts - giving up who you'd thought you were, and what you thought you could achieve, and adjusting to a new lived reality. Very exhausting, but coming out the other side I think it gives you a lot of freedom once you don't feel you have to keep masking so hard, but can just flat out say "I'm sorry, I just can't do that"?
I laughed, I cried. I am a mom to a teen with ADHD. He is struggling with that in some ways, and I am as his mom in helping him navigate. The panel and the comments give me hope for us and more specifically him as he finds his true niche in life whatever that might be. Thanks. ❤
Thank you so much for bringing these wonderful people together. I’m disabled with chronic pain due to nerve compression which makes my mobility atrocious. On top of this I then developed fairly bad fibro. This led to depression. I was built like the lovely Bernadette until my first spinal surgery. I’d always been very self conscious about being so thin but following my surgery and seriously heavy meds I’ve blown up into what I see as a blimp. I now feel fat and ugly. I hate talking to folk because my fibro fog mixed with Gabapentin makes me “loose” words. It’s been so wonderful listening to the wonderful panel and what they achieve despite their disabilities. I love sewing and I loved making historical costumes, not always accurate I might add although now I don’t make clothes for myself as I’m too embarrassed by my weight and shape. I’ve been concentrating on quilting and bag making.
Didnt realise I was a Spoon. Quite exciting! I agree with the feel of some fabrics being a challenge. Certain textures can make me feel sick,or make my skin crawl actually. Shoes I also have problems with,if I cant move my toes I can feel quite stressed out. I have autoimmune illness and depression.
Thank you so much for this video! Outwardly I seem mostly able bodied, I walk a little strange, and I get tired quickly and have a lot of arthritis pain in my feet. I had surgeries as a child and used a wheelchair often and even now if I go to a theme park or a long shopping day without my chair I have a lot of consequences for days/weeks after - or if I do use my chair I feel really self conscious getting in and out of it because I don’t want others to be like “well she can walk, she’s not really disabled” and take those thoughts into interactions with others. I’ve also experienced a lot of...condescension?? From strangers interacting with me assuming because I’m physically disabled I’m also mentally disabled which isn’t true at all and their tones are very condescending and immediately triggers me to feel bitter and angry. The staff at Universal Studios in Florida were amazing and totally inclusive and treated me with respect- it’s mostly other park-goers. Anyway, thank you for this video 🖤
This was so wonderful! ❤️ Great panel, and I’m so grateful to have had the opportunity to access it via RUclips. The pandemic is awful, but one weird side effect silver lining for me disability-wise is that I’m gaining access to all sorts of events I would normally have difficulty attending due to disability-related stuff, whether it’s small local weekly stuff that I’m able to attend more regularly now (or just at all), or bigger events. I’m genuinely sad for everyone missing the usual live event they would otherwise have gone to, but I’m also grateful to get to experience these talks and panels that I wouldn’t have been able to. The world is difficult right now; I’m glad of any bright spots. ❤️ Thanks, all of you who worked so hard to make this happen.
It feels good to feel represented. I've been wanting to start projects and start attending cons, but I find with my disability I feel the need to be able to escape. How do you get over the sunk cost fallacy, like the huge amount of time, energy, and monetary resources that feel "wasted" if I need to leave really early or miss it entirely?
That is such a real struggle! I do my best with careful planning, and tell myself it's better than no event at all, but that doesn't mean I don't push myself too far or feel like I've missed out when I crash/leave to avoid crashing.
I loved bernadette’s video about surviving costume college as an introvert. It helped me realize that even though my experiences may be different from others because of my need to take breaks and self-care along the way, that doesn’t make them bad or worse. If I need to spend three hours “missing out” on something so that I can spend one hour actually enjoying then that’s okay!
I have OSDD which makes it really hard to start, research and finish my projects, also, some people in my system have really wonkey stitching and don't listen to me when I ask them to leave my projects alone. Also its difficult because I have a tiny room and I'm not the only creative in my body, I have a painter and a musician in here too. Worse yet, my therapist and I are still trying to figure out what specific kind of OSDD I have so its really hard to explain to people "the basics" of my condition. I'm still going through it all. 😅
And I thought living with my freelancing partner was a challenge! I'm so glad you found this panel and got a chance to see other people talk about their challenges and successes. Thanks so much for sharing!
I've got DID and I understand entirely, one of our children loves to sew, but she's six and I adore her, but her stitching is so messy. I've tried to have her project and my project with mixed success, mostly now I just have to put away my project when I'm not working on it, because she's highly distractible and if she doesn't see it she won't go looking for it. From a system that has been in therapy for a long time and is relatively put together now, it gets so much easier once you actually know what's going on. Working what's going on, who's there, and why they're there is honestly 2/3 of the whole battle and the rest (at least in my experience) is just a herding of highly opinionated cats.
Thank you so much for this! I feel seen and heard, when I usually feel invisible. This warms my little spoonie heart. (Fibro, ME/CFS, ADD, scoliosis, epilepsy, Hashimoto's, bipolar disorder, social anxiety, osteoarthritis, severe hearing loss - and I don't look sick.)
I found the fork theory really helpful for me. The spoon theory is how much energy you have in descrete units and that different people have different numbers of spoons. The Fork Theory says that everyone is stuck with forks, large and small, all day, and that eventually they reach their limit. Everyone has a Fork Limit. When that limit is reached, the person either falls apart or retreats from the fray and the day. Forks can be big and small, can be easily removed or not. What's a fork for me might not be a fork or as big a fork for someone else.
When we alter our clothes to accommodate disabilities, that doesn't necessarily make them less historically accurate! Disabled people have always existed, and they probably used similar solutions to make their clothes work for them.
So true!
As a chronically ill very skinny person I feel so seen by what Bernadette said about wanting to cover up and not liking the sight of her limbs. I feel less alone and like I understand a little more why I feel the way I feel. I had never thought of it that way I thought I was just weird about my body
Me too. That felt SO validating to hear that someone else felt more comfortable covering up their arms or legs because they feel too skinny. Especially having had people point at my arms and go "LOOK HOW SKINNY HER ARMS ARE!" and having to wear toddler sized bracelets, I can get very uncomfortable showing my arms. I feel like they're too skinny and I don't like the comments I sometimes get.
Growing up as one of five kids and then frequenting cons and festivals with friends with disabilities, the number one practice we have is establishing a "home base." With larger cons and festivals it's a moving base (we plan renfaire ahead like we're going to spend approximately x amount of time in each "section") but it's just a space that we settle. So we'll walk in and establish home base and one person is always at home base, while everyone else explores. At renfaire home base is always at a "show" or theater area (I usually hang out at home base because I enjoy watching the shows) but it allows other members of the group to come back to home base to rest before continuing to explore. It just creates a safe space to come back to, that's common for all members of the party.
This is a great idea! I shall be implementing it from now on.
As a 62 year old seamstress with multiple disabilities, it’s refreshing to be a hearing this dialog. I’ve had to adapt for decades and always felt perhaps my contributions were not as meaningful as those who are more able bodied and minded. Thank you for bringing this important topic to light. ❤️
Your contributions are meaningful, valuable, and we are excited to have you :D
People with disabilities are so often considered by the larger world in relation to their ability to "contribute" to the economy and to society, and so it can feel that way in smaller communities too. Please know that anything you do that brings you joy is valid, no matter how it compares with anyone else's. We love all our sewing and costuming family, regardless of output, productivity, or supposed "perfection".
This comment is for Gilbert. Hope he sees it here or someone can relay it to him. A lot of online fabric shops will allow you to request samples. Sometimes free, often for a nominal fee. It's more common with sellers in North America, but even in the rest of the world distributors are often willing to accommodate you if you send them a polite email explaining why you would like to order some samples. That has helped me loads with being able to buy fabric confidently online. I have similar issues with fabric feel and never would have thought of requesting samples if someone hadn't suggested it to me. Especially now with all the shops being closed it's been an even bigger help than normal.
Crazy WoolLady thank you for this, i have never ordered fabric online for the same reasons. I would never have thought to do this, thank you.
As an average able-bodied human I found this extraordinarily informative and helpful. Huge thanks! 🤗
Yay! We like informed humans.
LOL Bernadette, "Oh, you're posture's so nice!" "Thanks, I literally cannot bend over." xD I know that feeeeel.
24:00 my brother has autism and he doesn't like clothes at all, never has. He only wears boxers while at home and was really difficult for my mom to dress as a child. He hates the feel of fleece and refuses to wear it, the same goes for tags in clothes. When he got his diagnosis we were so happy since we now know more about how and why he feels/behaves as he does since he has trouble communicating it himself.
SnappyDragon’s comment on participating in US Events needs to be blown skyhigh, and frankly the conditions she describes should be made something all reenactors stay aware of, and respond to, to hold the organisers responsible for creating equality. Ditto Gilbert’s stories.
Thank you! Feel free to chuck my remarks at your friendly local reenactors and production companies ^-^
"Emotional support human" is a thing I've always needed but never had a term for. Thank you for this panel, these dis/ability videos have given me a lot to think about.
I'd never used that phrase before either and now it is my favorite thing! It seems like a good in-between "buddy" and "carer".
My husband often helps me with anxiety triggers. I've used the term 'emotional support husband' to describe him more than once. The staff administering my last MRI seemed to understand the term and the necessity of his being in the test room with me
Same. I actually teared right up when Bernadette was talking about hers and the 'fear of being high maintenance'. There is so much I wish I could do, but I need someone to help me, and very few people don't make me feel like I'm putting them out. Even my family makes me feel that way. So I just don't do things. If only you could get a prescription for an emotional support human!
@@helent5114 Seriously! I'm so sorry your family treats you that way, that is not okay at all. I want there to be Emotional Support Training courses or something to show people . . . closest I've found is a few of Jessica Kellgren-Fozard's videos.
@@SnappyDragon thank you. I'm used to it now after 10 years but every now and then something happens to make it so obvious and it always hurts, no matter how much you tell yourself to ignore it. Classes would be great.! Thanks for the tip, I'll look her up
Thank you Miss SnappyDragon for having me and us on your channel! It was a pleasure visiting your lair and am grateful I got to speak about my experiences as as a deaf, balance impaired and chonically ill costumer!
It was such an honor to have you! You are welcome here anytime, especially if you bring Wegie 😻
So amazed to see this even discussed. I now realize that I love Edwardian clothes because they allow me to hide my scarred, mutilated, surgically traumatized body. A lifetime of dating men who made me feel ugly, unwanted, ignored, and unloved has led me to sew garments to hide behind. My latest goal is to sew a Medieval Kirtle so that I can hide every inch of me. Very enlightening. One really sad reality is getting dressed to the nines in a garment that took you weeks to make and, instead of “What a gorgeous gown!” you still only get “What’s wrong with your leg?”
Thank you for this.
Adapting my sewing tools/space to my ADHD:
I am practicing putting things away in their correct spot, by developing a system for myself that involves having very accessible and intuitive places for each item, requiring minimal effort to put away - open bins to dump things into, and a pull out keyboard tray for my most frequently used tools. Because I can push away back into the shelving it is less conducive to my habit of piling things on any available surface.
ADHD often entails running out of motivation/interest in the project about 70-80% of the way through, and therefore cleaning up when you finish...haha. So I'm trying to make that as effortless as possible. Simply having to open a container to put something away can seem too arduous, so where I can avoid it, I don't use lids.
I tend to have 5+ projects going on at time, and the way I've found to not have all of them on the table, making it impossible to find anything I set down, is to have a collection of empty bins that I can dump everything related to a project into in order to set it aside.
But ultimately, I have 5 pairs of scissors (in addition to my fabric shears) in and around my sewing area so that I can lay hands on a pair without wasting time, and losing my train of thought, trying to figure out where I lost them last.
I love all this advice! It reminds me of a story I heard somewhere that boils down to a therapist advising a client that they didn't have to fit themselves into an "abled" definition of success or functioning, as long as their strategies worked for them.
I don't have ADHD (at least I think so), but I use almost the same strategies to organize my workplace.
@@Anne-iz5br And that's the funny thing. They're sound, logical strategies. Why the heck, being a fascinated consumer of organization and life hacks since the age of 10, did I not come across anyone suggesting these things until reading a book specifically on organization and household management strategies suited for ADHD people? I wasn't diagnosed, so I had no idea to go looking for them. Fortunately I had stumbled upon some of them on my own.
The obsession with aesthetic closed bin, hide in pretty boxes, Marie Kondo make everything item individually visible within the drawer - YES!, at the expense of spending a LOT of time putting things away in a (meditative?) time consuming and exacting way - NO! Never going to happen, it's going to remain on the floor and my drawers will be empty... this is a strange aspirational kind of organization that I don't feel works for all that many people, neurotypical or otherwise.
Yes. I also have ADD - and organization is my BEST FRIEND. Having project bags so I can easily go from one project to another without having lost pieces keeps me going on everything.
@@lynn858 Thanks, I may give this idea a try.
Honestly, when V mentioned internalized ableism at using "chronic illness," I kind of felt that so hard. I have a laundry list of mental health issues like depression and anxiety that only worsened after I had my baby, ADHD, a slight asymmetry in my hip that causes pressure on my sciatic nerve which causes intense pain and mobility issues when it flares up, the beginning symptoms of potential RA, which my doctor is monitoring, and a thyroid disorder that causes me to gain weight, lose my hair, fatigue, joint inflammation, poor temperature control, and a laundry list of other issues. I could go into organ failure if I don't take my meds. It took me so long just to use the term chronically ill because it just never occurred to me that it wasn't supposed to be this hard just to function as a human being. It never occurred to me that it is something i have to consider at all times, which other people don't.
I know this was rambling and long and way too much information, but this just made me feel so much less alone in the world and that my feelings and struggles are valid and real and I'm not being a baby for feeling them. So thank you for this.
Wow, that's a lot of us with scoliosis! I wonder if some of the costume interest is due to having to make or alter clothes to fit. Once we're there, it's not much of a leap to getting even more creative with clothing.
It's certainly possible! My into to sewing was modifying clothes for my height (I am tiny), and I feel like that draws in all sorts of people who aren't well served by the narrow range of sizes and shapes available in modern shops.
I have POTS, EDS, MCAD, 50° double scoliosis curve, sensory processing disorder, PTSD, depression & anxiety. Although many of those limit my daily functioning, sewing and historical clothing research IS something I can do and have fallen in love with. I now have a service dog, so I like to include her in costumes. I could relate to many of the issues the panelists talked about.
Service dog in costume sounds so cute! If there are pictures please tag me on IG, I would love to see.
My cousin has POTS EDS and MCAD as well :( and a bunch of other things related.
I didn't know there were autistic costumers / costubers! Thank you for being here, and Gilbert, thank you for showing that you don't have to wear costumes on a daily basis to be valid! I don't have an official diagnosis yet but I think I might be autistic. I'm only halfway through the video and already a lot of what the autistic panelists said resonated with me. Thank you ❤️
I'm so glad we may have helped you! I am about to offer a tip, but please know this is an unofficial non-medical tip:
For seeking a neurodiverse diagnosis - if you take an online ASD "assessment quiz", it's not an official diagnosis or test, but usually you can print off the results and your answers for free (don't be fooled by companies asking you to pay). Then bring the printed sheet into your family doctor or psychiatrist and/or medical professional.
Like I said, it's not a diagnosis in and of itself, but it can be helpful to doctors to speed up some preliminary questions.
Also, take another one of ADHD, which has a LOT of shared symptoms.
Autistic here 👋 glad to know of you. I too, was so happy to see two autistic panelists
I know Liz opened the panel with "not every term/symbol will be inclusive" but I do want it noted that (at least in the United States/Canada) the Deaf/hard of hearing community prefers those terms over "hearing impaired". Liz did very well moderating the panel and giving structure. Thank you for your time.
Thank you! We appreciate the feedback.
You're absolutely right. I am aware of that preference, and I can only apologize and blame the nerves of a live panel for failing to use the correct terms. In all honesty, I don't remember much of the panel! Thank you for bringing this to my attention and reminding me.
I loved that you included mental, autoimmune and hormonal illnesses (because there is still a lot of inclusion work to do there!!!!!) and the spoon theory.
Thank you! The set of people and issues represented were totally organically chosen, just people in the CosTube community who were interested. Perhaps I talk about it with more people because I have one, but invisible illnesses seem to be much more common than the public would have us believe.
It's great seeing this representation. My great grandmother until recently still knitted socks and gloves for me and her other great-grandchildren. Due to being 91 years old she now can't take care of herself due to seeing scary hallucinations. Back in the day she made carpets, sew dresses and knitted many things. In school we tried knitting and sewing which really made me appreciate her work and skill, seeing so many passionate people still into sewing today (when it's not the norm anymore and people discard clothing as trash every season) would make her happy 💖💕
I really hope you guys keep this Pannel up on RUclips, we really don't see that much representation out there, and this makes me feel so happy to see this. We need more videos like this! Thank you all for sharing
It's staying up right here. So glad you enjoyed it!
@@SnappyDragon Great! I am happy to hear that! I thought that all the videos would be deleted at the end of the event!
@Julie-Anne Dorval Nope! Unless someone says they are removing a video, they are all staying up.
I love having snacks such as sports bars (either homemade or store bought, both do the job, one is cheaper the other is easier) around the house. That way I can have a quick food break without fully getting out of my project.
I have ADHD and anxiety but I've never thought of them as disabilities before. This panel enhanced my understanding of myself and disabilities in general. Thank you!!
Omg!!!! I have rheumatoid arthritis and felt like I couldn’t get into this community. I’m so excited to watch this!!!
Welcome! I'm glad you're here
As a creative with ADD, anxiety, and depression, I feel better knowing there are others out there that manage to do great things while managing disabilities.
Thank you all so much for making me feel seen.
As a person with type-1 diabetes, asthma, borderline personality disorder, attention deficit disorder, scoliosis, anemia, eczema, post traumatic stress disorder, and debilitating anxiety (and only the first two diagnosed prior to adulthood), I often feel like I have to pretend. People think I'm lazy because I sleep a lot and usually don't have the energy to do much or go places. They think I'm a flake because I often cancel plans, or because I often have little-to-no memory of things (the latter because, unbeknownst to them, I was disassociating). People, in general, find me hard to deal with and I'm often, openly, described as a "bitch" because of the wild mood swings and obsessive compulsive tendencies that arise from my BPD and anxiety, or as a "slut" due to the hyper-sexuality that is also common with those issues. I was seen as "gifted" in school and struggled constantly with the double whammy of being judged by my peers for being weird, and by my parents and teachers for being "lazy" and for procrastinating, and generally for not getting as good of marks as they thought I should. I've spent most of my life feeling like I couldn't do anything right, would never be "enough." A lot of that had to do with not knowing what was "wrong" with me for so long, but even now I often feel that way because, even though I know all this, other people don't and the way they treat me makes me feel like a failure. Even the ones that do know often can't, or won't, deal with me because it's too much for them, but most people are completely ignorant to it all, excepting the Diabetes, as I usually make that known for my own safety.
During this Covid crisis I've discovered that I'm better off when I don't HAVE to interact with other humans and have the freedom to manage my time as I please: I work when I feel like working, I eat when I"m hungry, I sleep when I'm tired, I wake up when my body says "wake up," and if I have a day where I just CAN'T with people, I DON'T. It's an ongoing struggle, particularly as mental health care isn't something I have access to anymore owing to my financial situation, so videos like this (*discussions* like this) really help me more than I can say.
I also want to give a shout-out to the entire CosTube community for being a great boon to my mental health! I stumbled onto it's existence through Bernadette's "Mrs. Crocome" videos, and have been absolutely thrilled by the opportunity to learn so much from such wonderful people. YOU GUYS ROCK! 💜
I’m autistic, and dealing with chronic pain (sometimes severe) that as of yet I haven’t managed to get a definitive diagnosis for, and the associated depression and fatigue that comes from both autism struggles and pain. I still work a full time job, including some weekends, though on my bad days it’s mostly going through the motions in a room on my own whilst doped up on painkillers. I was considered a key worker in the current pandemic so have been at my workplace as normal since the lockdown began, but major changes to my hours, breaks and overall working patterns was very difficult to cope with. I look absolutely normal to most people so it’s hard not to overdo it trying to meet other people’s expectations. I enjoy sewing in my time off because I can make clothes I am comfortable in and like and am keeping a blog, but I can’t seem to do enough on my good times to have sufficient content to schedule for the bad. I get partway through mock-ups for a project then it gets waylaid for weeks until I get some days that I can face cutting fabric on the floor again (my home is too small for a big table to cut on). I unfortunately don’t have sufficient natural-fabric options in fabric shops here (they don’t even have cotton calico in my local shop, and almost everything is polyester-based), so have to buy online, but it means I buy lots and lots of swatches before buying. I keep them all in a folder along with information about it and where I bought it from.
Drew Samuels My dining table is the fold-out type, with a flap on both sides. It does well for cutting bodices and the like, but I still have to resort to the floor for cutting skirts. I’m working on an Edwardian straight-front corset just now, because the 1895 walking skirt mock-up has been unceremoniously dumped in a corner until I can face dealing with that again,
I have a folding cutting table, and yes, it's not quite big enough to do skirts easily even though I'm a very small person. It's definitely better trying to shift things around on the table than it is wrecking my body on the floor, though.
Thank you all again! This was a superb panel - it stands out not just for those of us interested in sewing/costuming, but as an outstanding discussion regarding disability life and discussion overall. The openness of the panelists was great, and the awareness this brings to how those of us with disabilities find ways to be part of the communities we are interested in is particularly special.
We're so glad you enjoyed it!
I have arthritis in my hands and wrists due to an autoimmune disease. The most helpful tools for me are compression gloves (I use Lions Brand), ergonomic tools, and scissors with a spring in them. I am always adjusting my tools and setup to try to make life easier. I also tend to start projects early and give myself grace if I can't make a deadline due to my disease. Please don't give up on your hobby due to a disability. Sometimes the right tools/setup can make all the difference. And please be nice to yourself because this world is tough enough without you beating yourself up over something you can't control.
hey! RA? while it's not nice that we have these issues, it's nice to know we're not alone!
Tools and setup make *such a difference*. @Retro Claude's video has some discussion of that, and I've gone from hating and messing-up my patterning and cutting-out, to loving it now that I have a table at a height that doesn't hurt my shoulders.
I'm going to try the gloves!
Evelyn Rojas So true! I am always so self-conscious of my gloves because I have to wear them at work and in my college classes. However the more I wear them, the more people tell me about their disabilities and struggles. While we still don’t know what exactly is causing my arthritis and other health problems beyond it is autoimmune, it is comforting to know that I am not the only struggling with chronic illness.
Chanel McCoy They are my go to aid. I have a pair for work, school, and my craft room. I get them from Amazon Prime for about $10 per pair. I like the Lion Brand because they are fingerless but definitely experiment to find a pair that works for you. Here is the link: www.amazon.com/Lion-Brand-Yarn-400-5-1202-Stress/dp/B003W0ITBM/ref=asc_df_B003W0ITBM/?tag=hyprod-20&linkCode=df0&hvadid=198074277282&hvpos=&hvnetw=g&hvrand=4599648561591679577&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9022360&hvtargid=pla-385832050726&psc=1
Knowing how many of my favorite costubers are actually disabled helps me so much ;-;
Thank you for support of my disabilities! I call it what it is. Pain is a normal part of my daily life. I find my work and crafts a wonderful distraction. At times pain is so severe I cannot focus, only cry. But I’m 62 and just keep on making myself do as much as possible! It does give me great satisfaction!!
Thank you for a lovely discussion.
Had the panel been smaller so much information would have been lost. I felt you handled the challenge of being sure all voices had a chance to speak well
Thank you! I had no idea we'd end up with so many contributors when I suggested this and I am so glad they could take part.
I can’t believe on a disability panel I didn’t want to take up enough space to share my whole laundry list of issues 😂 Anyway I just wanted to say thanks again V for hosting us, and Liz for modding!!!
We were all hilariously in-character
You are a gem, and I'm so grateful for you.
@@LizCapism ❤️ ❤️
Juul, I am so proud of you. I know how uncomfy you feel when you have to talk. Well done!!!!
I can so relate to a lot of things that were mentioned, thank you for this panel.
Una_Sc0ttishlass Thank you 🥰
We are so lucky to have her
Juul is such a gem!
Thank you all for sharing with us,as a disabled mum with a disabled daughter it's lovely to meet you all and yes support human s are a great help and please be that person.
I totally felt the comment about natural selection trying to get you. In my soul kind of feels. I'm new to this community and I'm so thankful to have found a place where I can be anachronistic trash and fit in! I have Lupus, Fibro, Thyroid crap, Bipolar disorder and massive anxiety. This panel has barely started and I already feel seen. Thank you for that. Okay, back to my pocket embroidery.
I love that one! My usual is "rolling a 4 on your Constitution", for any fellow DnD nerds . . .
My list sounds an awful lot like that! I’m so happy you found this helpful
Sometimes, it honestly feels like life is just a process of accruing an increasing collection of disabilities until we finally pass away! 🤦🏻♀️😅 Like some kind of bizarre bingo... It's a bit hard too when you have siblings who've managed to dodge all those genetic bullets - sometimes can't help feeling "Why me??" But the sense of solidarity and mutual support which exists in panels & online communities like this is an awesome thing to find...
It would be great to do another one of these with Retro Claude her channel is awesome and she talks about disability and accomplishment so well.
Liz McCord, I am very impressed of your hosting. You did this in the most wonderful way. This is fantastic.
Thank you, all the panel. You did great!
Huge thank you for this discussion! As a recent mobility aid user, my perspective has greatly shifted on considering and interacting with the world. It is a wonderful resource to hear on others experiences!
You're so welcome!
This was probably the most important video for me of the whole CoCoVid! Many thanks to all the lovely people on the panel. You are all kinds of gorgeous!
How great is this - I sew from my bed, as spend so much time in it so sewing machine on the overbed table and been wondering if I should bother with costuming, I have only been sewing two years, used to be a knitter but cannot do it anymore and was going mad not creating so tried sewing and found as its not repetitive like knitting pain levels are not so debilitating and I love it. I have felt so much outside the world for so long due to my health conditions - MS, ME/CFS, Fibro and now diabetes - as not being able to turn up to places regularly always meant any groups I joined I was asked to leave so I admit I have been rather lonely sitting here in my bedroom but since taking up sewing even though not made friends as don't really interact as been nervous that people will judge me and see me as unreliable and useless as its been my experience for past 20 years in the normal world. I am drawn to early medieval and late regency as I tend to overheat and not worn anything with sleeves ( but adore kirtles) for the past 30 years ( some hormonal problem which I was assured would go at menopause but didn't). I am now 64 and if I have mentioned my age and health limitations ( on ordinary sewing groups not costuming ones ) I have been asked why am I even considering costuming aI should just should to stick to everyday clothes, undies, etc that I do wear ( I since starting to sew have not bought or worn anything I did not make except bras, not attempted them yet but even made a coat for when I do get out) I will never get anywhere to wear them plus being rather big in size but can if I work hard to get out sometimes, like my sons wedding a year ago today and I wore a silk and lace dress I made for it. Just watching and listening to you all makes me less lonely even if I never interact with anyone in the community, I follow many of you on here and on Instagram - I am #sewingfrommybed and you have all, in fact all the costume community, share so much and slowly am learning and am ready to have a go at my first costume - a regency ( Jane Austin time style) dress and underpinnings, not sure if they will be ok on me or not. It thrills me to know that younger people will not need to have the life I have had but can be part of something that is outside their health conditions. For me, it's too late but you wonderful people will ensure no one will be left out. Thank you all xxxx
Thank you so much for this. I run into a lot of physical issues due to my lymphedema (among other issues). I have a hard time walking and standing for a long time. I've felt like I was the only person in the historical sewing world with issues. Thank you again for helping me feel not so singular.
This was so amazing! As someone on the autism spectrum I often find it difficult to be a part of a community and this video was so nice to watch. I need to remember that I am not alone with how I feel and I should just get myself out there in whatever form I can! Thanks
I just really appreciate how the chat was used to provide caption-like information and increased the capacity of viewership to include people who are deaf and hard of hearing.
Basically, costube is full of cool people who are kind
Liz, what a wonderful, encouraging, positive and compassionate way to moderate this panel!
I'm so upset that I missed this Livestream! I'm Latinx with mental health diagnoses as well as a new path in diagnosing an autoimmune disorder. Growing up, mental health was so faux pas that I didn't get the help I needed until college, which resulted in a lot of manic and depressive episodes.
Add that on top of being a goth in a family from the Bronx that is most definitely not open to such differences, dressing how i wanted was a stance against what was expected of me. Now that I'm more mature, medicated, and slightly more comfortable with my preferences, I'm happy to have found this community.
❤️ I'm so glad you got the help you needed! I also got my mental health diagnosis later in life and am starting my autoimmune journey.
We are happy to have you in this community
This was my favorite panel of cocovid by a long shot! As someone who lives with several physical and mental disabilities, I loved hearing so many of my struggles echoed by people experiencing the same thing. For me, making my own clothes has been so empowering, and I’m so grateful to find so many content creators to inspire and uplift me throughout this process!
Thank you so much for doing this! I’m legally blind and, although I don’t know how to sew yet, I do crochet and am very interested in learning how to hand sew. I could relate to a lot of what was said, especially surrounding attending events when you can’t drive, and having to plan for things that most people don’t have to worry about. Thanks so much for sharing and making me feel less alone.
We're so glad you could join us. We didn't have any visually challenged or blind folks on the panel and so our understanding of necessary accommodations for that were limited, but I hope our voices were clear at least.
I think learning to hand sew would be a great idea! I can tell you that way more than my eyes, so much of my hand sewing depends on feeling. I depend on my fingers to detect how to bend the fabric and make the needle behave. I think you would do wonderfully.
@@LizCapism yes, you all sounded great! I was sad to hear that Zoom isn't very accessible for the hearing impaired. It works very well with screen readers for the visually impaired. Very sad. Thanks so much for your thoughts on hand sewing, too! My grandmother tried to teach me on a machine and I just never took to it. I agree that the more tactile nature of hand sewing will make it much more enjoyable.
Thank you so much for this. What a lovely inclusive panel.
I am so glad I stumbled onto this. I have a hidden disability, ad I'm a convention-goer. I'm not much of a costumer, but I have been developing an interest in disability and conventions for about 2 years now. I'm on the Concellation group and looking at ways to get my local conventions to be more aware of people with disabilities, to provide better access for us, and to have content that is more inclusive. A costuming panel would be an amazing idea.
As an SCA girl from a ways back, I also appreciate the info on adaptations in making the clothing. The SCA in particular becomes extremely picky about 'period' construction as you become more advanced and participate in the arts and sciences competitions. I also have those inflammation and joint issues, and making even a t-tunic w/ strictly historical methods would leave me a wreck.
i like that juul's videos are silent, some videos are so noisy.
It definitely makes them more accessible to me. I am autistic (like Nikki and Gilbert), and easily overstimulated by speech and music.
They're so peaceful! I watched her "Ahem" video at the end of the day yesterday and it helped so much with winding down.
Yes! I have sound sensitivities and find her videos so refreshing!
So upset I missed this live. Un/fortunately have a full time job. I'm so glad you all came together to discuss this topic. I'm new to the costume scene and I have been struggling with my own hardships, I really needed this video. Thank you.
Welcome to costume club!
Really feeling the un/fortunately in that comment.
This panel is life and needed to be on the internet. Thank you!
Yay! Then we did our job.
Thank you so much for this. I am a teacher of the visually impaired. I have spent time working to make Living History experiences of a variety of time periods accessible to a wider range of learners. I have used creative activities, experimental archeology, and role-play/costuming as teaching methods for many years. Many of the students I have worked with have multiple challenges. And many of those students are very young and just beginning to develop self-advocacy skills. I so appreciate your frank communication about how each of you works your way through the world. My young students often struggle to articulate their frustrations and needs and I sometimes have to guess what a hold up is in order to help them work through it. Your specific statements about how you problem solve and how you feel about it have opened my eyes to better ways to communicate and help.
I plan on sharing this video with my older students. It is so important for them to see representation in EVERY aspect of life-, especially creative endeavors. There is such a drive to fly the " Despite ( fill in the blank) they got straight A's." battle flag that their emotional health falls by the wayside. I appreciate the panel's openness about feeling down and frustrated and working through it as best as possible. Your commentary about dealing with "funny looks" is so valuable in letting people know they are not alone. It is so clear that each of you has used your passion for costuming as a way to successfully manage emotional health and celebrate your talents. And, it is so important for everyone, but especially for young people, to see that having help to achieve large and small goals- even ones that are about fun- is just part of the human experience and nothing to feel strange about. This panel discussion is so valuable.
This comment makes me extra super happy to have been able to contribute to this. Thank you!
This is *such* high praise, and I am seriously honored
Sid - I really am grateful for people like you who work to educate children! What excellent and hard work! If you're not already familiar with people like Cheyney McKnight (NotYourMommasHistory) or Daryian Kelton (TheRealDariyanKelton) they are amazing historical interpreters (among many). Cheyney in particular works hard to make her historical interpreting and work in living history museums accessible to all. You should really see what she has to offer if you haven't already.
@@LizCapism I have already been a Cheney McNight fan girl for a while. i will definitely check out Dariyan Kelton.
Thank you, thank you, thank you all for this panel! I am a very sensitive Type 1 diabetic, so very excited to hear from another diabetic costumer. This does affect clothing choices. I need to be able to check blood sugars and take frequent injections. I have a continuous glucose monitor now, which is attached to my belly 24/7. I have to avoid anything that rubs against it, or restricts it. I also need to be able to inject insulin, which requires easy access to my injection sites, usually my belly or thighs. As a youth I was tall and thin, so found it necessary to make my own clothes if I wanted anything to fit. Now I am 69 years old, and “Stout.” Still need to make my own clothes, or alter other clothes to make them fit. My hypersensitivity is an asset as a stitcher, as many of you can probably relate. I choose projects based on the texture of fabric, as well as color and print. I have a unique and unpredictable wake/sleep cycle, so am glad to be able to work from home to accommodate fatigue, working when I have the energy, resting when I don’t. I am an expert at ergonomics, having worked for several years in sewing factories (in the 1970s) and learning how to make myself comfortable and avoid pain when sewing for extended periods of time. I’ve also worked for many years as a licensed massage therapist, so understand about the uniqueness of human bodies. Everybody is different! Yes! I celebrate all of you with deepest gratitude.
Goodness! We could all definitely learn something from YOU! Where's you channel, my friend? ;)
That sounds fantastic. I struggle with knowing how to avoid hurting when I sew for a long time.
Thank you for making the self-gaslighting comment. This is something I've definitely struggled with but didn't think about it in those terms until you mentioned it.
I personally didn't either until I saw a graphic about it floating around Instagram a few weeks ago. It seems to have sparked a lot of good discussion and introspection!
There was also a moment in a pre-panel meeting we all had where one of us asked the group: How many of you have, because of your illnesses or related co-morbidities, have thought you had Covid but then tested negative?
ALL OF US RAISED OUR HANDS. It's so easy for us to feel like we're lying to ourselves about how poorly we can sometimes feel, but at the same time we also know that we're ill... it was an interesting revelation.
@@LizCapism Oh yes. My anxiety definitely had me thinking twice about the shortness of breath and chest tightness. Thankfully I was able to calm down and those symptoms went away pretty quickly.
I like listening to this, I have rheumatoid arthritis which affects my ability to use my hands or even walk (knees), especially on sudden cold days. And it's mostly invisible too, even though I've had it since I was 16, also have blood sugar issues, I start quaking when I miss a meal. so it's great to hear that people can still manage to get things done, regardless of the limitations and frustrations. Thank you all for sharing. I wish I had an emotional support human, but unfortunately I am not friends with anyone who shares most of my interests. I tend to be the emotional support human for my friends since I like just about everything except comedy films based on stupidity (it makes me rage rather than laugh) and horror (keep tricking myself that I'm ready to watch the horror scifi without getting scared and nope, nope, nope, I will still hide behind the popcorn XD)
Good emotional support humans can be tricky to find D: maybe someone will make a video training or something for them.
@@SnappyDragon Yes, please!
Thank you so much for this.
I take my hat off to this group.
I cant say how helpful this video is.
I have tears in my eyes knowing that it is posible to follow this path regardless the disabilities.
Thank you. I will be following everyone.
As someone w multiple mental health illnesses I've at times thought of myself as disabled. When I first started watching this I was surprised when they started saying they their disability was of a mental health illness. Thank you for including mental health illness in this discussion
Thank you for this discussion! I hope the spirit of inclusiveness in organization of public events will soon find reflection as specific practical steps, like introducing "emotional support buddy system" or rearranging the schedule with enough time between workshops for people to collect themselves and manage transitions better, etc.
I do realize there's not enough time in the panel to cover every issue, but it did feel like the specific challenges of being a content creator ["with a disability"] could have been addressed in more depth. I am certain many ADHD costumers (myself included) have been very reluctant to start a channel for fear of yet another failure due to not being able to:
a) sustain a regular posting schedule for any length of time, because it involves planning and executing a million steps totally unrelated to creating and talking about costumes;
b) respond to viewers' comments on a regular basis, and
c) have to constantly be engaged and keep track of YT, FB and IG - that seems to be a requirement if one wants to reach more than a handful of people. Managing social media "properly" seems exhausting, especially when one feels that they swim against the current as it is every single day without a "supportive human" nearby.
It would have been great to hear in more detail how the panelists handle those specific challenges - perhaps next year?
I was going to write you a comment about this but I have a lot to say... So I'll make a video and post it this month. Working with ADD is hard, but manageable. It really comes down to understand how you work. But again, I have a lot to say about this and will make a video.
Absolutely! I appreciate the feedback
@@scrappypatterns Understanding is not my problem (sigh), but I look forward to the video - don't procrastinate ;)
I have hypermobility and am in the process of being tested for HEDs. I found this really interesting I have only just started sewing historical dress but have been sewing for about 6 years. I have found that fatigue and pain caused the greatest problems. Thank you for the amazing videos
This is so wonderful and it's amazing to feel seen and accepted, I wish all communities on youtube were as open and friendly as the costuming community- as someone with autism, mental health problems and chronic pain and fatigue I often feel as though I can't achieve what others can so it's amazing to see others showing thier journey, it is very much appreciated and is inspiring (not in a condescending *all disabled people are inspiring* way but as in I take inspiration from everyone's experiences with difficulties similar to mine) I'm hoping I am able to delve into costuming and historical sewing more in the future 🤞
Yes! Please delve! There are so many excellent beginner projects that involve almost no previous skills, or extra equipment. You CAN do it. We are here for you.
@@LizCapism that's such a lovely sentiment, thank you for your encouragement 😊
While writing this response I'm at roughly 50 minutes into the posted livestream. And on top of that almost 5 months later since posting.
But I do still want to share my thoughts and experience on the subject. Ever since I was a young girl I have been atrackted to the style of the 1950, at that age I was too young to voice my opinion and preferences clearly so I was mostly dressed as a "standard" fashion of the eighties and nineties. It took me until the early 21st century to start dressing in more of my preffered style. And by then I had also had learned more about the late 19th and early 20th century style and found that very attractive too.
I learned to sew and knit etc already at a very young age so as a 16/17 year old I was starting to sew my own clothes but had a hard time finding patterns that would "fit the bill" enough to my liking. And so with a little help from my mom I also started to adapt patterns to my liking and combined them with some contempary clothing that looked like a good match to become not too different from my own agegroup. Mind you there wasn't as much information out there like there is nowadays and my internettime was still limited since DSL and the likes where not there yet either.
Nowadays I'm completely bedridden due to a combination of 3 mayor problems, 2 caused by a DNA defects: one which gives me the wrong tension in my muscles and the other has to do with making faulthy collagen cells in every single celltype in my body but is most annoying in my joints that dislocate easilly. Then at age 7 I also developed a auto-immune disease that affects my different nerve systems and causes 24/7 extreme pain which started in just my left foot and ankle but has gradually spread to every single millimetre of my body.
The DNA defect that causes my muscle to have the wrong tension is what has made me bedridden, I'm severly deformed in my joints and have an S-type scoliosis from it as well.
Historic fashion is still a love of mine but I'm no longer able to sew for even an hour a month or so. Besides that would fitting clothing that have no stretch at all be really hard since I already need help getting dressed, I can't stand or sit up without help and non-stretch materials would cause more creasing on my back (which is what I lay on all day, every day) and when the smallest crease gives an insane amount of extra pain, it's simply not possible anymore.
I still hate to buy any modern looking clothing and am fortunate with a mother that can still sew me shirts and so on the way I like them. She also knows how soft a fabric will need to be for me to be able to wear it and always looks for fabrics with a high natural fiber content and just enough stretch. Besides having 24/7 pain I also sweat 24/7 no matter what the temperature is. And cotton, wool, linnen, silk and the occasional viscose are the best at keeping my skin dry. We tend to use cotton and viscose mostly for summer since a stretching linnen would still crease to much beneath my body and is usually not woven smooth enough as well. And heavier cotton and viscose or light weight wool for winter garments. I don't get to go outside a lot so I also don't need really warm clothing.
Knitting is a hobby I still can perform and for knitting socks I tend to use yarns that are pure wool since they don't go into shoes and I don't walk or stand on them. For sweaters I also go with all natural fibers, be it cotton, wool or silk or a blend of those fibers. Since knitwear is stretching on its own I find that I don't need to adapt patterns most of the time. Only the heels in socks which I knit less angled as both my feet are pointed down and turning to inwards. Every type of knitted heel has been adaptable so far and I'm also not afraid to use a pattern as an idea to just knit what I truly need, both in socks as well as sweaters and everything besides that.
Being handy with hands has been important all my life in making and adapting clothing to fit my wishes as well as the needs of my body. I'm forever gratefull to both my mother and maternal grandmother for teaching me all those skills at such an early age!
I am so glad this panel exists, and that you all made such an effort to make it as inclusive and accessible as possible. Thank you! Disability has long impacted how much sewing/making I can do but only recently has started affecting how I do those things. I have found myself avoiding making things because it’s so much harder than it used to be (and just binge watching costube). Cocovid has inspired me to make some accommodations in my sewing setup so that I can still create and maybe it will be a little easier.
Yaaay making the things you love accessible!
This is amazing video thank you all so much for speaking about disabilities i have adhd, ocd, bipolar, anxiety and functional neurological disorder and i loved watching you all and i think it is important to see that we have different things we deal with but all in all we are humans and i love that you all talk about "emotional support human" because it is so important to have them around you.
Glad you felt seen! And yes, emotional support humans can be essential.
This was so nice to see. I have Hyper Mobile Ehlers Danlos Syndrome. I am trying to learn to sew but my hands hurt constantly and are pretty shaky, so I’m having a hard time actually doing any projects.
Thank you so much for doing this panel. As a disabled person it is comforting to know that others are tackling the issues and how.
I have adhd and diabetes and I can hyper focus and forget to take care of myself...so I use a timer as well. It is one of the best things I have ever implemented into my crafting life
I love that the armour was mentioned. And i love the fact that one person mentioned needing a group to be safe.
Thank you to all panelists!
This was such a delightful, insightful discussion and I'm so glad that I was able to see it (and that I'll be able to return to it in the future). Thank you! So much!!
I know I'm a bit late to this party, but just wanted to say a massive thankyou for this discussion, it's very nice to know there are other historical clothing enthusiasts with a wide range of challenges are out there.
I have fibromyalgia, and no one fully understands the issues it comes with. and to say it feels disheartening is an understatement. They all just see it as an excuse and call me being lazy or too high maintenance. That I need to "get stronger" as if I can miraculously build a tolerance and become "normal" and less of a burden to deal with. I have fatigue so I rely on coffee to keep me awake during the day but I get made fun of for being an "addict". I cant tolerate extreme temperatures so I get teased at for being "too sensitive" and a whiner. My muscles and joints hurt and standing up/walking for long periods of time takes a toll on my body, but again people call me lazy for sitting all the time, unfit, that I need to "get out more" or exercise more. Again to build a tolerance and become "normal/standard". I would prefer to not work jobs that require me to be on my feet 6+ hours straight, but since I don't "look sick" getting any disability accommodations or applying for disability would be an uphill battle. So I just suffer in silence and try to trudge through my life. Hoping I will reach a point in my life where I can have more access to accessibility accommodations. And stop being treated as a lazy potato when I honestly try my hardest. And feel like crap I can't function as a "normal" human being.
I feel your pain, literally. The people around you need to sort out their perspective and understanding-- feel free to shove this video in front of them if it might help.
Ouch... Relating so hard right now!! I think the lack of clear medical research results on fibro (until extremely recently) has really made this issue worse? Because the causes and mechanism weren't known, it's led to some pretty ingrained social misconceptions of this condition as being either hypochondria, faked for attention, or just laziness. Much the same problem seems to crop up with many other chronic pain/fatigue or mental health conditions too, where people font understand and so decide to just dismiss...?
Sometimes it feels like invisible disabilities are almost harder to operate with than visible ones, because many people are less accepting of/credulous towards mental/neurological damage than they are of clear physical impairment? We do have a certain level of 'passing privilege' if we mask successfully, so there's less of the intentional microaggressions. But having to explain what's wrong then often gets treated as complaining, seeking attention, or just plain making things up.
I really really hope that the new results proving the biomedical causation of fibro may gradually help erode some of those social prejudices, as it becomes more understood? But I guess we just have to accept that it will take time, and in the meantime continue to provide as much support, encouragement and validation for each other as we can, as a spoonie community. Thank goodness for the internet, which lets such people find they are not alone! 🤍
Thank you all for this video!
The pomodoro tecnic helps me a lot (I have ADHD).
Delightful and affirming! Thank you, everyone!
Most of us are pretty exhausted from this weekend, but I feel I can speak for everyone when we say THANK YOU. You are what is delightful. This wouldn't have been possible without all of you watching.
@@LizCapism
I'm so glad to learn more about this, there's a lot to think critically about and implement in my platform as a creator
Amazing discussion, thank you!
Thanks!
As a costumer who uses a electric cart and oxygen I have had the joy of costuming on stage at World Science Fiction Cons and at Costume Cons with the International Costumers Guild. I found that this was the first time in my life that I could express my art with fellow artists. This is a good panel to do. Thank you
it took me ages to pluck up the courage to ask if I could do costuming in my wheelchair - I looked into getting period wheelchairs but it didn't work for my legs.... My hands arms are also affected as is my eyesight - so I struggle - really pleased to see this
gutted I missed the livestream for this
I read something recently about how overzealously judge the "historical accuracy" of their fellow costumers are often reinforcing structural prejudices like racism, and I think that can apply to ableism as well. You are absolutely welcome in the costuming world, and we are fortunate to have you.
@@SnappyDragon I have just asked different organisers if I am welcome at their events - everyone has said yes so far - I was really surprised as I thought it would be better to have the correct wheelchair for the time - but people appreciate it just isn't possible - I would if I could but they allow that I can't - maybe one day I might find them -you never know....
@@clarewilliams5907 I don't think it's fair of any event to expect someone to sacrifice/modify their mobility aids for "historical accuracy", it's pretty blatant ableism. That said, I can absolutely see one of the events I participate in expecting that from cast members and it frustrates me so much. I can see "costuming" one's mobility aid turning into a really fun project if it's something they can and choose to do, but it should be up to them, not anyone else.
I'm so glad you've been well received by the events you've contacted!
If you are ever told by anyone that you cannot attend an event because of a mobility aid, call upon your new community of fierce costuming friends and we will gladly manage them. (Snappy Dragon will chomp them, and then the rest of us will pop them in a cauldron for a delightful little ableist stew!)
Or... more realistically, save the emails and messages and present them to your local disability/human rights advocacy group. It's not just about attending a party in a nice costume, it's about your right to participate in the world.
As someone with ADHD, i find with hyper-focusing and getting a pet helps. I cant hyper-focus on sewing when my dog will eventually come and harass me.
I miss having a cat, unfortunately, we’re not willing to pay the extra 100$ a month and the 250$ security deposit on pets to get one right now. We’re saving the money and will probably just buy a house and get pets then!
Thanks I am a stroke survivor for 20 yr. I died couple times and my final stroke at 23 yr robbed me my brain for years.
I beat why the expert claimed. I sew and embroidery medieval
I recall that long, long ago that the Churches helped the physically challenged children. It is awesome how determined you all are. Bravo!
Nikki you done great , this whole panel has had so much to offer , thankyou all for your openness & time
RUclips is planning on getting rid of community captions. Is there any way the costube community could get behind the campaign to stop it from happening?
Gigi Ososki We have noticed that, but thanks for bringing it to our attention 💛A petition for this has been shared among us, we are all a little busy at the moment but I will personally make sure to remind everybody once more, once the weekend is over!
I've already signed the petition, and I think all of us agree with it-- we may just need a moment to breathe after CoCoVid before calling our platform to account.
Thanks so much for caring about this. Many of us got this news smack in the middle of CoCoVid, which for many videos will rely on the community contributions to get captions uploaded by our live transcriptionists and interpreters. It is so upsetting to us and I can't speak for the community as a whole, but I am very willing to raise heck for it.
After finding the support groups for one of my disabilities to be more negative than I felt was helpful, I began a FB group for those of us who historybound with disabilities, if anyone would care to join. We can share our mutual interests, hacks, successes, stresses, etc. It's called 'A Fellowship of Historybounding Spoonies.'
Hi, I’m autistic in such a way that it makes attending events impossible. Too much noise, too much social rejection. I love costube for this reason. It’s similar to being social. I absolutely love Noelle’s chatty vlog style videos, she helps me to feel leas isolated
I really enjoyed this in broadening my understanding and knowledge of other people with dis/abilities. Also I have been fighting admitting that I do need help and need to accept that I do have some disabilities. I always think I'm not struggling enough to say I'm disabled. Also thank you to @Lizcapism for bringing some representation for BPD it's something I struggle with and don't talk about.
I also struggle with claiming that term "disabled", I think it's extra hard for those of us with invisible conditions and/or who are good at "faking it". We're glad you could join us!
Among autistic people, “faking it” is often referred to as “masking”, or sometimes “camouflaging”, and having to mask too much is extremely draining and frequently leads to burnout.
Connie! Thanks so much for your comment. I didn't talk much about it in the panel because my BPD doesn't usually directly affect my sewing experience, and as moderator I wanted to step back and let others speak, but I'm glad you identified regardless. My ADHD was only diagnosed a couple months ago and I have been struggling with imposter syndrome in called myself "neurodivergent", despite the fact that doctors have confirmed it.
What I can say for certain is that help is something you deserve. We're so happy to have you here. :)
Awesome subthread! Tackling the shift in personal identity that comes with moving to identifying as disabled (rather than just somebody who's living with some issues) is something I can relate to hard. Don't know if it's the same for everyone, but it felt like a grieving process of sorts - giving up who you'd thought you were, and what you thought you could achieve, and adjusting to a new lived reality. Very exhausting, but coming out the other side I think it gives you a lot of freedom once you don't feel you have to keep masking so hard, but can just flat out say "I'm sorry, I just can't do that"?
I laughed, I cried. I am a mom to a teen with ADHD. He is struggling with that in some ways, and I am as his mom in helping him navigate. The panel and the comments give me hope for us and more specifically him as he finds his true niche in life whatever that might be. Thanks. ❤
This was very educational and I'm so glad you all did this and shared on this platform. Thank you so much.
Thank you all for sharing.
Thank you so much for bringing these wonderful people together. I’m disabled with chronic pain due to nerve compression which makes my mobility atrocious. On top of this I then developed fairly bad fibro. This led to depression. I was built like the lovely Bernadette until my first spinal surgery. I’d always been very self conscious about being so thin but following my surgery and seriously heavy meds I’ve blown up into what I see as a blimp. I now feel fat and ugly. I hate talking to folk because my fibro fog mixed with Gabapentin makes me “loose” words.
It’s been so wonderful listening to the wonderful panel and what they achieve despite their disabilities. I love sewing and I loved making historical costumes, not always accurate I might add although now I don’t make clothes for myself as I’m too embarrassed by my weight and shape. I’ve been concentrating on quilting and bag making.
Didnt realise I was a Spoon. Quite exciting! I agree with the feel of some fabrics being a challenge. Certain textures can make me feel sick,or make my skin crawl actually. Shoes I also have problems with,if I cant move my toes I can feel quite stressed out.
I have autoimmune illness and depression.
Thank you to all of the panellists here.
Thank you so much for this video! Outwardly I seem mostly able bodied, I walk a little strange, and I get tired quickly and have a lot of arthritis pain in my feet. I had surgeries as a child and used a wheelchair often and even now if I go to a theme park or a long shopping day without my chair I have a lot of consequences for days/weeks after - or if I do use my chair I feel really self conscious getting in and out of it because I don’t want others to be like “well she can walk, she’s not really disabled” and take those thoughts into interactions with others. I’ve also experienced a lot of...condescension?? From strangers interacting with me assuming because I’m physically disabled I’m also mentally disabled which isn’t true at all and their tones are very condescending and immediately triggers me to feel bitter and angry. The staff at Universal Studios in Florida were amazing and totally inclusive and treated me with respect- it’s mostly other park-goers.
Anyway, thank you for this video 🖤
This was so wonderful! ❤️ Great panel, and I’m so grateful to have had the opportunity to access it via RUclips. The pandemic is awful, but one weird side effect silver lining for me disability-wise is that I’m gaining access to all sorts of events I would normally have difficulty attending due to disability-related stuff, whether it’s small local weekly stuff that I’m able to attend more regularly now (or just at all), or bigger events. I’m genuinely sad for everyone missing the usual live event they would otherwise have gone to, but I’m also grateful to get to experience these talks and panels that I wouldn’t have been able to. The world is difficult right now; I’m glad of any bright spots. ❤️ Thanks, all of you who worked so hard to make this happen.
It feels good to feel represented. I've been wanting to start projects and start attending cons, but I find with my disability I feel the need to be able to escape. How do you get over the sunk cost fallacy, like the huge amount of time, energy, and monetary resources that feel "wasted" if I need to leave really early or miss it entirely?
That is such a real struggle! I do my best with careful planning, and tell myself it's better than no event at all, but that doesn't mean I don't push myself too far or feel like I've missed out when I crash/leave to avoid crashing.
This has happened to me. Honestly, it’s not a good feeling- but you just have to be kind to yourself.
I loved bernadette’s video about surviving costume college as an introvert. It helped me realize that even though my experiences may be different from others because of my need to take breaks and self-care along the way, that doesn’t make them bad or worse. If I need to spend three hours “missing out” on something so that I can spend one hour actually enjoying then that’s okay!
Thank you guys doing all these amazing videos.
We had so much fun doing it and we're so happy for the amazing responses. It's been a dream. Thank you for watching!
I have OSDD which makes it really hard to start, research and finish my projects, also, some people in my system have really wonkey stitching and don't listen to me when I ask them to leave my projects alone. Also its difficult because I have a tiny room and I'm not the only creative in my body, I have a painter and a musician in here too.
Worse yet, my therapist and I are still trying to figure out what specific kind of OSDD I have so its really hard to explain to people "the basics" of my condition. I'm still going through it all. 😅
And I thought living with my freelancing partner was a challenge! I'm so glad you found this panel and got a chance to see other people talk about their challenges and successes. Thanks so much for sharing!
I've got DID and I understand entirely, one of our children loves to sew, but she's six and I adore her, but her stitching is so messy. I've tried to have her project and my project with mixed success, mostly now I just have to put away my project when I'm not working on it, because she's highly distractible and if she doesn't see it she won't go looking for it.
From a system that has been in therapy for a long time and is relatively put together now, it gets so much easier once you actually know what's going on. Working what's going on, who's there, and why they're there is honestly 2/3 of the whole battle and the rest (at least in my experience) is just a herding of highly opinionated cats.
Katie Shead I have to say, the herding of highly opinionated cats is a mood. And I’m just glad no one has shown an interest in “helping” me
Thank you so much for this! I feel seen and heard, when I usually feel invisible. This warms my little spoonie heart. (Fibro, ME/CFS, ADD, scoliosis, epilepsy, Hashimoto's, bipolar disorder, social anxiety, osteoarthritis, severe hearing loss - and I don't look sick.)
I found the fork theory really helpful for me.
The spoon theory is how much energy you have in descrete units and that different people have different numbers of spoons.
The Fork Theory says that everyone is stuck with forks, large and small, all day, and that eventually they reach their limit.
Everyone has a Fork Limit. When that limit is reached, the person either falls apart or retreats from the fray and the day.
Forks can be big and small, can be easily removed or not. What's a fork for me might not be a fork or as big a fork for someone else.