My Blindness Story - Albinism and Vision Loss
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- Опубликовано: 12 фев 2021
- This one's far more personal than most of my videos. I didn't plan what I wanted to say, but I think that's what makes it more honest and more truly represents the experiences and emotions I have had working through my vision loss journey. I've worked my whole life to feel included. I've tried everything to be "normal"... But that's never been my journey. From bullying to discrimination I've seen it all. Blindness has been a winding road of ups and downs, with many wrong turns along the way. But I'm proud of who I am today. I would love to hear about your experiences with vision loss or disability. I know we likely share many details, but the story remains uniquely our own.
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Thumbnail Description: Tamara sits in her filming space with a slightly sad expression on her face. Her hands are clasped together. She is wearing a navy blue off the shoulder jumpsuit. On the left, over a semi-transparent blue background, white text reads My Blindness Story Albinism and Vision Los.
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I have no words. Thank you so much for sharing such this. As a sighted person, this is so eye-opening and educational for me. I'm so, so sorry you've had to deal with so much. It breaks my heart into a thousand pieces and makes me sick to hear how people have treated you. But I'm so glad you were able to take something away from each situation and can be (and should be) so very proud of all you've fought for and proud of who you are. You are such an inspiration. Looking forward to more videos.
Thank you so much for those kind words. 😊
I was born with a rare form of osteoporosis that effects my vision. I am not fully blind but I am legally blind and I can relate to so many things that you mentioned. Until I have gotten connected to other people with visual impairments I really have not had much of a social interaction with people my age. For a long time I new that I am different than other people however I didn’t acknowledge it so it never bothered me. Now that I realize what it is like to have a disability I realize that it can lead to so much depression and discrimination. Teachers and staff brought visual impairments to students the same way they did with you. This really angers me now because they pushed that I was dangerous to be around because I have OI and the wrong way of describing a disability and now it is up to me to re-educate people on the truth. I don’t mind doing that but I hate when people spread misinformation and make it harder to give an accurate answer. So I’m glad you are getting this information out to people. I truly appreciate you taking responsibility for something you don’t have to do. You’re channel has brought me entertainment and still gets the message out to people. You going through every comment you find truly means a lot. I hope you continue to have success in life and things with medical help improves for you. You have got me thinking about creating a channel to do the same thing for people I want to educate people about disabilities for a better future for others
Hi Garett, I'm sorry you went through such a similar experience. But I am comforted to know I am not alone. It's when we can come together and talk that we can learn how best to communicate and what does and doesn't work. It's a shame that most education for us was done by people without disability and it made things harder. But I'm sure you and I both learned a lot about how to educate, re-educate, and advocate. So hopefully things improve for the next generation of blind/low vision/disabled folks.
@@UnsightlyOpinions I completely agree with you. I appreciate you saying that I’m also glad to know I’m not the only one. You’re channel has gave that idea out a lot I have never found a channel that is the honest truth you see to be very honest and knowledgeable and I respect that because that doesn’t happen often. As a 15 year old I hope that I can help give another perspective and be more experienced in advocacy
You should be a counselor for people who have conditions, similar to yous, as your videos are so informing!! "Big Hugs" to you, Tamara!!
I can't even begin to imagine how strong you are. I suffered blindness temporarily and I have huge respect for all blind people. They are the strongest people I can think of.
You have an incredible strength. Your mom would be so deeply proud of the woman you have become. I can't believe this channel does not have more subscribers - it's such a great resource. I'm sighted but I am learning so much about the blind community and resources. Thank you for all the information that you provide.
You are so kind! Thank you so much!
The way you described your grade 1 experience of being publicly shown that your different.. breaks my heart it happened that way.
wow, you are remarkable. I have never enjoyed a RUclips from a blind person as much as I have enjoyed yours. I came to this vision impairment late in life so I did not go through the things that you have, but I can appreciate it and I’d love your, joyful life. Gloria Culver.
Thank you so much for sharing your story! I am a 47-year-old with low vision and I have been dealing with glaucoma all my life and corbea disease of late . I just been feeling really depressed with my gradual vision loss, and it's so hard to coelpe mentally emotionally and physically. This video really gjves me a lot of perspective of how you can manage with your vision loss with a strong mindset. I thank you so much taking courage to produce this video and it made a big inoact
Hi Sebastian. Thank you for your kind words. I’m sorry that your vision loss has been getting you down. It’s definitely a process to learn to accept yourself as you are and adapt to the constant changes vision loss brings. I’m glad you were able to take something from the video and I hope you see brighter days ahead.
I am proud of you too. I experienced bullying in my early years and understand a little of what you went through. I don't know how anyone who knew you could treat you with anything but love and respect. You are gorgeous inside and out. Take care.
I’m so sorry you’ve had to go through that. I have been homeschooled, but being called names because I was unique has always been a fear of mine. I’m not legally blind but I can not read things that are far away from me. I have to hold books about 1-3 inches from my face.
Every experience good and bad has taught me things about the world and shaped who I am now, so I’m glad for all of it. Being called names isn’t something I would wish on anyone but I believe it’s made me a more resultant person needing to learn how to adapt to everything life throws my way. Being low vision isn’t easy for you either. I bet your eyes get very tired reading books when you need to look so closely.
I really appreciated this video and could certainly empathize with it. Thank you so much for sharing. I think blindness brings about so much loneliness and it is so nice to have others to understand what a lot of us blind students go through. I've never thought about it before but maybe I'll make a video sharing my blindness story in the future too. Thanks a lot for the Video.
I would love to hear your story! I think the more stories we share (so long as everyone is comfortable sharing) the less isolating it feels. I love hearing the similarities and differences between so many blind peoples experiences because we are such a unique and diverse community of people.
ruclips.net/video/tkjn-EF2CV0/видео.html
Hi, Tamara, Thanks for sharing your story. It does anger me to me learn how dismissive those that could have been instrumental in your early years as you struggled, did so callously cast you off & treat you poorly. I guess they were the ones that were were truly "blind" in capturing your worth human value, as a student or peer. I wish that they could "see you now," and how you have blossomed into the self-sufficient, capable & resilient person, despite the negativity at their hands. God bless you!
I feel the same way. I hope that by sharing that experience even though it was hard will be valuable to someone else going through something similar, or serve as a guide of what not to do in many cases for those who support those with disabilities.
This was so eye opening.
Hello Tamara. I am really proud of you. You have a really positive attitude. I can understand what you must have gone through.
Best Regards
I have a learning disability I was born with, though you would’t think so looking at me. I can fully understand the bulling and hate. I also lost friends. I sufferd from deprssion and anxity. I hated myself and everything that made me diffiernt and evryone (yes teachers too) I could’nt be me. I would never be able to do anything”normal” kids/teens do. Now age 19 I proved them all wrong and finally enjoy being who I am.
Thank you for this. I’m sorry you where treated so horrbly
Yes you are different: exeptionaly smart, creative, beautiful and kind. I really like it that way
You are beautiful inside and out! Don't let anyone tell you different. I am starting to loose my vision in my right eye due to ischemic optic neuropathy and found your channel just in time, I always believed that for those that never were given a fair shake in life, that it is up to us to make the best of what gifts we still have and surround our life with positive energy and push that energy back out into the world. You, putting yourself out there into the public sphere is a good thing for the world and all of that positive energy will come back to you through your efforts. The people out there who put out negativity into the world are not good people. When you take what is given you and make something beautiful and positive out of it, that is what brings goodness into this world. So keep doing what your doing and don't listen to the bullies, naysayers and haters, they are the ones with the problem, not you.
Hi Duchess, Thank you for your kind words. You have a very positive outlook and that strength will take you many places. I'm sorry to hear about your vision loss, but know we are all here supporting each other in good times or in bad, so never hesitate to reach out if you need anything :)
Omg almost at 400 subscribers!?! You're famous tamara! Haha ❤
It’s awesome! Im so happy people are enjoying the content. :) I’m planning something really fun for the big 500 when we get there!
You are so strong i want to be as strong as you are ,I am having glaucoma since I was born I have vision loss for one eyes and the other one low vision just recently I couldn't accept who am I and I am very emotional ,doctor recommends me rehab and mobility courses and take office management computer skills for blind
You’re absolutely gorgeous. Personality, looks, class & all. I too was also born with albinism, my vision is 20/200 in both eyes.. I stumbled upon your video giving lessons on how to use a white cane. I have been referred by Physical Therapy to begin using a white cane for my mobility issues, as my vision is heavily affecting my balance, causing me to drop things more, very clumsy, it’ll also assist in letting others know that I am legally blind. I completely understand the scrutiny you go through, it’s so unfair to be treated in a horrible way due to a condition God has decided to give us. We didn’t ask to be born this way.
When I’m out in public and I ask others to read things to me they look at me with the most disrespect & sometimes make rude comments & I don’t always get the help I need. I could go on & on.
People think I’m faking all the time, about being blind & having Albinism because my hair is a little darker (was born with red hair) it changed over the years, however I burn in the sun as well. My skin & eyes were most affected. I’m 36 and still struggle daily mentality & emotionally & physically with my condition. Bless you for creating this channel so people alike won’t feel so alone & can learn from a positive beautiful person going through the same 🤍✨
Thank you for sharing your story Sophia! It sounds like there are so many things in our journeys that we share - like learning to ask for the assistance we need and accepting the need for mobility tools. It’s definitely a journey and I appreciate you sharing part of it with me. All my best on your continued journey to love yourself as you are. 🤗
Thank you so much for sharing your story- your honesty and openness is admirable. I truly believe a lot of nasty behaviour comes from ignorance. Perhaps your videos can help teach someone who otherwise would say or do harmful things to a blind person. As someone who has had limitations put on them by others I understand how frustrating it is- I am still working on forging my own path even if it does not look like the average person's. Your story and videos are helpful to me, so thank you 🙂
Thank you. That’s very kind of you to say. That is definitely my hope. If people can hear different perspectives to their own they may consider new or different options when working with folks with disabilities or differences. :D
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This is so beautiful I don’t even know where to begin. I am speechless. After hearing your story, I can understand exactly why it took so much for you to be able to even sit down and record this. I’m sorry to hear that you went through some of the rough things that you went through, but like you said, you took away some thing from every experience and that is the most important thing that you could ever do. Every experience, whether good or bad, is a life lesson and it’s up to us to decide whether to be negative or positive about it. I myself don’t think that I would go for a cure if there was one for my eyesight as well. I’m glad that even though you struggled for a very long time to accept your situation that you have come through out on the other side and have become more confident! Your content is some of my favorite. You are so well spoken and very influential! Keep up the awesome work!
Thank you so much Nicole. I think you said it better than I ever could. It’s definitely more about the journey not the destination and that was a tough lesson to learn through many wrong turns. But you are one of my favourite creators so hearing you say those things really makes my day! 😊
@@UnsightlyOpinions you are so sweet! That makes me so happy to hear!😁
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Whoa, but you have turned out so perfect.😃
I’m still a work in progress :) but I’m definitely in a much better place than I was. It’s been a long and winding road just like most people.
Low vision person here. You have a kind voice. Thank you
Here in New Jersey our special education resources would provide books with large print for her. An Individual Education Plan would be provided for her.
Thank you Tamara for sharing your story, we live in Perth Western Australia and have a 11 month old grandson who is in our care full time at the moment and has Albanism, from the time he was born we began the journey of understanding his condition and my wife and I watched your story we with great interest so thank you so much for sharing. It’s been assessed that he has roughly 15 % vision at this time but this doesn’t stop from doing all the normal things a child of his age would do, he’s an amazing little guy! Our very best wishes to you Tamara.
Thank you for the lovely comment. So glad to have you here! I do want to mention that my visual issues are on the very severe end of the spectrum so your little one will probably have some good useable vision and most folks have pretty stable vision their whole lives. If there’s any questions you have I’m happy to share what 2 cents I may. :) good luck on your journey!
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Oh my God I have albinism as well and your story is so similar to mine where are my vision started feeling and Kids were incredibly mean to me I’m so glad somebody gets what I’m going through
Wow! I never thought I would meet another person who went through what I went through albinism and all. Everyone I’ve met I n the albinism community seems to be able to see so well and get by with useable vision. I felt a little removed! I am so glad to have made your acquaintance. 😊
@@UnsightlyOpinions Oh my gosh same I stumbled upon this video and I was like somebody with albinism also having vision loss it is so interesting I am in middle school right now and I’m starting to learn braille just because my vision has gone so badly but our Elementary school experiences and middle school experiences are so similar to mine it’s super weird and they still don’t know why I am losing my vision it’s progressively getting worse
@@Lainegggg That was me too for the longest time! I was told to stop faking it more times than I can count. They still aren’t 100% it’s just their best guess as to why my optic nerves failed. Hence the wait for genetic testing.
Braille is an amazing skill to have! I’m so glad I learned it now. It made all the difference in post secondary and high school. And even now day to day for keeping things organized.
@@UnsightlyOpinions Oh my gosh same I’ve had so many doctors told me that it’s so hard I’m really glad that I have someone who like that’s what I’m going through and I hope we find out what is going on with us soon for me it’s always a difficult not knowing so I wonder if we have like the same condition with albinism
Glad to have a whole PWA family here on this little RUclips channel! :)
Oh, wow, your story is great, and you’re very strong,, I am impressed, I am so sorry for all your bad experience, I am from Ukraine, and I am totally blind, I lost my vision and 25 years old. No, I am in the US, Tennessee, I would love to learn more about you and your Channel and experience!!! I am here already for nine years,, but I cannot find my place in this life. I lost my vision, because of diabetics, since then years old,, when I was 32 years old, I should go in dialysis and Zamm I got Kidney And pancreas transplants. Well, everything that happens, everything through the best, anyway, I believe so. Thank you for your channel and you’re very smart and interesting person. Do you have Patient Facebook? I am sorry for my grammar mistakes!
Thanks for this! My best fiend is blind, and this helps me kind of understand what her life might be like.
Although we all have different experiences, I’m sure your friend appropriates you trying to understand her experience! I know I would :)
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STOP CALLING YOURSELF BLIND!!! YOU ARE NOT BLIND, WE HAVE THIS DEFECT BECAUSE WE ARE SUPERIOR
So sorry you went through that I was bullied too
Whoa your channel has grown alott
A few folks every day. :) I’m pretty happy with it!
It makes me angry that there are teachers who would bully students. So unprofessional. I hated school when I was younger.
I hate bullies. I really do. 😡😭
It bothers me too! Looking back at the experience, it shows me just how much of a difference the good teachers vs those that were dismissive or discriminatory made. I wish we could all just be nice to each other and accept others differences.
@@UnsightlyOpinions
I was bullied so much I ended up hiding from everyone during lunch and recess. I gave up on myself and didn't think of what I'd do with my life, drifting along wherever opportunity show itself. It felt really alienating and embarassing when people asked me what I planned on doing with my life and I couldn't answer them..
Thanks for being inspiring and getting over such difficult problems on life.
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The thing they did about pointing out your differences and vision was horrific! That would never be allowed nowadays.
You're so cute! 🥲 Adorable
I have had so many of these similar experiences
I’m glad to hear I’m not the only one and sorry that you had to go through so many challenges all at the same time! 💜
I have RP was in a blind school for 7 yrs of my childhood lived there
Fellow blind/low vision buddy here with Rodmonochromatism. Soooo much of what you shared is echoed in my own journey.
Thank you so much for sharing your experiences.
Long distance commiseration.
❤❤
I’m really worried. I’m 25 and have albinism I still live at home and feel that my vision has gotten worse over the last 2-3 years. Where I work part time I have to deal with a lot of bright lights It’s inside a bar so a lot of strobes and lasers. I don’t think I understand the impact that could have on my eyes. It’s very scary because I’ve experienced nothing but discrimination in the work force. I feel like when they see you have a vision issue they just don’t want to help. I make only about 20k a year. Luckily I’ve been saving like crazy and have a 6 moth emergency fund and no debt. But I don’t know how work with this. My vision is currently good enough to drive. I’m afraid I will loose that sense of purpose if I can’t have that freedom. I’m stuck in life and don’t know what to do. I’m worried one day I will need to be on disability and that it won’t be enough.
Hi Matt,
I know it can be scary when you think you are losing vision. I'm glad to hear you've got stable employment and a safety net. I would suggest seeing your ophthalmologist or optometrist right away to check if your vision is deteriorating and if so if there's an easy fix. There are many things that cause vision loss that are very fixable for most folks like cataracts, nearsightedness, farsightedness, etc. and those things can crop up at any age. Best to get it checked out sooner rather than later.
While I would love to drive, it has never been an option for me. You can absolutely learn to work with whatever your vision decides to do. If it's stable awesome, if it's deteriorating it doesn't mean that you'll end up on disability or unemployed. It just takes a little longer to find the right employer who is willing to work with you.
I find strobes to be incredibly painful! I don't know how you do it! Good luck to you my friend. Sending you good vibes and encouragement. :)
ruclips.net/video/F5zT4DATYcw/видео.html
Bullying is the worst, especially, when teachers are also involved, omg it should not be - it makes school so much harder to endure. Teachers should be all-inclusive and empathic towards every student.
As for standing out like a sore thumb, because you are different, when as a kid all you try is to fit in, that is not easy.
But what you had to endure - that must have been so difficult. I just don't get, why people can be so mean, deliberately. WHY?
I am not sure, why our society puts such an emphasis on eye contact.
I have learned to hold eye contact, because that is what you are supposed to do, right - but it often feels uncomfortable, depending on the person.
Temple Grandin wrote about animal behaviour, and animals in the wild will see eye contact as a sign of aggression. Dogs approach each other from the side, not from the front - I find that interesting that so many neurodivergent people also struggle with eye contact and walking or sitting side by side is preferable than opposite each other...
Wow 😍 looking so cute princess 💖
A rotweiler guide dog ,sick the bullies boy.I feel sad for what you went through.
While a Rottweiler guide dog would be hilarious, for me it's in the past, and I think every experience good and bad has helped shape the person I can be proud of today, so while it sucked, I don't begrudge the experience. I think it taught me a lot of patience and empathy towards others. :)
@@UnsightlyOpinions You have a great attitude , my albino niece was bullied at school .Rising above it is amazing .I have seen a German shepherd guide dog once . On a bus from Canada to the States with his human .
I was told by everyone I didn’t need my equipment or was “lucky” to have it. I have a question for you though did you also struggle with people thinking you were stuck up because they would say hi to you in the hall and wave but you couldn’t do the same?
It happened all the time. I had the nickname ice queen where I worked not because I was being deliberately unfriendly or cold but because no one took the time to speak when they walked past so I had no idea it was them. Disability equipment should not be a privilege or something someone should be “lucky” enough to get rather a right to equal access.
@@UnsightlyOpinions Absolutely! I totally agree with you, Tamara 👍🏻
Hello sister i want wach your every videos but i have difficulty understood English language iam trying understanding
I think you are doing very well with English! It’s a difficult language for me sometimes and I’m a native speaker! Thank you for watching the videos. :)
Yaa sister you are welcome iam excited watch your video because i also albinism so you should very nice keep working but I can not do anything happy to see you and proud of you and thanks for reply massage
ruclips.net/video/F5zT4DATYcw/видео.html
Me and sister have albinism
Always glad to meet more fellow PWA :)
@@UnsightlyOpinions well for some reason I left a long note on your website have a look if you want to
You are very beautiful
Gee nothing wrong with your brain but the adults around you were a bit daft .
I think so too. haha But what can you do.
@@UnsightlyOpinions Grin and bear it I suppose .