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  (#1 (permalink)) Old
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Do you let your disability get in the way of your life? - April 3rd 2013, 04:44 AM

First of all, I would like to kind-of-sort-of proudly say, I'm blind.

Well, legally blind.

I was born with this disability. It made me a really shy person because I was scared that people would judge me for looking different (I was on steroids and immunosupressives my whole childhood because of cornea transplants), acting different (looking at things funny, having to have special machines like a monocular or a magnifier to help me see things) or just in general. And yeah, I did get made fun of. A lot. This made me even more paranoid as I grew older, and started becoming depressed (it doesn't help that my family situation is messed up as well).

Right now, I have vision that's known to be 20/400. This means whatever someone with regular 20/20 vision can see from 400 feet away, I can only see from 20 feet away. I don't use a cane (but i do own a ID cane that I use in busy cities) and I don't have a guide dog (sadly! I love dogs ), but it still affects me. I can't drive a car. I never got to learn to ride a bike. I get lost in new places pretty easily - which makes me anxious about going out places on my own.

I'm slowly starting to come to with these issues. In my head, I rationalize. Yeah, it sucks I can't drive. But think of all the money I'm saving on insurance and gas (I get free bus tickets). But the going places without getting lost is a big thing still. I'm trying to push myself little by little, maybe making someone take me somewhere and once or twice and then remember the route, or looking up the busses I need to take.

Anyways, in a way, it is sort of a gift. I got to meet many different people and have had lots of different experiences because of it (special blind and visually impaired camps and outings, scholarships, etc). I get academic accommodations for computer versions of my textbooks and exams. But that's mostly it. I try very hard to not let my disability come in my way. Sure, it makes me anxious still, but I am trying to push myself and still be like everyone else.

The main point of this little rant is: If I can do this, so can you. We all face challenges in our lives, either they are physically, sensory or mental, they still affect us. You can't let this run your life. It doesn't define you, it is only a piece of the whole picture. Don't let it run your life.

Ok. Done now. Tell me your stories if you'd like! And if you questions, feel free.
   
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Re: Do you let your disability get in the way of your life? - April 4th 2013, 02:04 AM

Hi Mila!

Hahaha, I agree with you there, took a while to get to that rationale about driving but I'm glad I got there too.
Welcome to TH by the way.
I struggled with a lot of what you mentioned while growing up, not fitting in, having to use special technology etc. I ended up being rather depressed to due to not having any friends really, being rejected by people (them making plans and canceling or writing what they were talking about during lunch so I couldn't know etc) and also due to some things in my childhood (probably main reason for my depression.)
I agree that the camps and programs for the blind during the summer really were helpful in assisting me with becoming a stronger person and they definitely helped with feeling less alone. Also the scholarships and other ways to connect with people that are legally blind aare very helpful too.
I am really glad you get to experience bus routes and having people bring you places a couple of times and then figuring out the routes yourself, that is really great determination and will only make you more comfortable as time goes on. I am hoping to one day live in an area where I can use busses but currently my college campus meets all of my needs practically and where I live is so rural there is not any public transportation (except the bus that goes like once a day.)
I use a cane and I recently have begun the application process for a guide dog so if you are interested in applying, I can let you know of some schools and about the process: you can PM or VM me if you want.
Also, I do not find what you wrote to be a rant. It is inspiring and I am glad you were open to sharing your story and listening to others.


"i don't care your intentions. I just want you to know my self-hatred never took me where I wanted to go. At the end of the day...I can pick at the pain but I can't cut it away."
   
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Re: Do you let your disability get in the way of your life? - April 4th 2013, 03:17 AM

Hey! Yay, I get really excited when i meet other blind people, hahaha, I know it probably sounds weird

Thanks for telling me your story! I understand completely, lol. I used to be called the "crazy eye girl" in middle school (a side affect of my condition is nystagmus, which means my eyes move constantly). And the friends I had would usually try do things to confuse me because I couldn't see what they were doing, just so they'd laugh.

This might seem weird or creepy, but did you ever go to/heard of SCIVIS (Space camp) in Alabama? I went a few years ago and loved it a lot and that's where I actually started to fully accept myself. Then, I started branching out from there. I'm a Canadian so most of the things I've participated in are through the CNIB.

And yeah, the busses thing is something I always had a kind of fear of. I'm looking into getting an O&M instructor when I move in the summer. But you're lucky that your campus has everything (mine does too, its like a ten minute bus ride out of the city, except it can kind of get inconvenient when you need something or are hungry and every things closed, lol).

And thats awesome you're getting a guide dog Something else they have now is miniature guide ponies, they're meant for rural areas. I think they're really cool, lol, but I hear they are very expensive. But I wish you luck in the process I have a friend who went to the California school last year, and I have another friend who is applying to get one, but I don't know where she will be going yet. I really think it would be cool to have one, but I don't think my vision has gotten to that point of needing one much yet. One of my corneas is failing tough, so we might just have to see.
   
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Re: Do you let your disability get in the way of your life? - April 4th 2013, 04:10 AM

Haha, I do too. It is not weird.
I have nystagmus too.
I've heard of space camp but I've never been, sounds cool though.
I've done a lot of outdoor camps (hiking, repelling, swimming etc.)
I kind of fear busses too, I do not have enough practice with them to be very comfortable or comfortable at all really. I havent been on a bus in like a year....
I hope the process goes well for your friend and it is cool you know someone else with a guide dog; I know other people too that have them and they are great to talk to about what life is like with one etc.
I've heard very little about the minature horses and they are not an animal I would apply to receive. I love horses but I wouldn't want one if I had to travel to busy places and how would bringing them into places work? I believe people are more used to guide dogs (which would be stereotypical because when people think of blind people they either think of a guide dog or a cane) so bringing a horse might cause some conflict or resistance. Plus leaving them outside would be counter-productive to them being a guide. Maybe there is more to this than I know...I wouldn't doubt it.


"i don't care your intentions. I just want you to know my self-hatred never took me where I wanted to go. At the end of the day...I can pick at the pain but I can't cut it away."
   
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Re: Do you let your disability get in the way of your life? - April 4th 2013, 04:56 AM

Yay, lol. My condition is Aniridia. So I've had a bunch of transplants (even the artificial cornea), stem cells, cataracts, blablabla, lol.

And yeah, I've heard of those types of camps and been to a few, sounds like fun

And yeah, I only go on them when I really need something off campus, like a prescription, or an appointment, or something...But I'm moving to a really big city in a month so I am going to have to get a lot of practice then with busses and subways, haha.

Yeah, I've participated in Goalball so I have met lots of people with guide dogs. Its fun to meet them and talk to their owners. I love animals. And yeah, the pony thing is kind of unrealistic unless you lived in a very small town your whole life, but I just find it kind of cool, aha.
   
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Re: Do you let your disability get in the way of your life? - April 4th 2013, 05:26 AM

Oh wow, none of that is available for my condition, they are getting close but they've still got a ways to go...
Hopefully your move to the city goes well.
I haven't played goal ball in years, there is no team near where I live and not enough people with visual impairments to make a team. I'd like to find a team though one day.
I agree it is a cool idea, the pony will probably be useful for some people.


"i don't care your intentions. I just want you to know my self-hatred never took me where I wanted to go. At the end of the day...I can pick at the pain but I can't cut it away."
   
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Re: Do you let your disability get in the way of your life? - April 6th 2013, 05:03 PM

I think the attitude you have toward your disability is very commendable. It's great that you're willing to keep moving forward despite the difficulties you've faced.

As for me, I try not to let my disability run my life, but sometimes that can be difficult. I have a seizure disorder that appeared out of nowhere when I started high school. The doctors say I don't have epilepsy, I just have random seizures. I've been put on several different kinds of seizure medication, but so far none has worked. Some medicine I took in the past, along with some medicine I'm taking now, has made my hair start falling out. I'm lucky I had really thick hair beforehand, or else I'd barely have hair at all. It's gotten so thin, and it breaks easily.

My seizures also cause injuries; I tend to bite down very hard on my lip (you're unconscious during a seizure) to the point that I bust my lip open and have a difficult time eating. I could also easily fall and hit something when I start having one, it's happened several times before and once I even had to get stitches. I'm also 19 years old and can't drive, because I could have a seizure. I have to be at least one year seizure free before I can try to get a permit. I also can't get a job, not only because I'm a liability and nobody wants to hire me, but because no matter what job I try to find, it would be extremely easy for me to get hurt very badly from a seizure. Waitress? Nope. Fast food worker? Nope. Wal mart? Even there, nope.

However, I do try to look at the bright side of things and I continue to hope that someday, the doctors will discover why the medicine I have to take doesn't work, and be able to rid me of my seizures.


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Re: Do you let your disability get in the way of your life? - April 9th 2013, 04:11 AM

Hey Haru
it's great that you are trying your best to come to terms with you disability. I know that it's especially hard to do that when your brand new to it (like for me, I was born with it, so its pretty much normal, but for people who just get it out of the blue, it can be more challenging/scary). I understand that it must be hard that you can't drive or get a job -- cause you've had those plans your whole life, and now it kind of just toppled down for you when this seizure disorder started. So yeah, it can make a big impact on your life. But all you can do is look forward and hope for the future

& hey, about the hair thing. I completely understand. The meds that I was only my shoe life made my hair super thin (I literally had bald spots at the end of elementary/beginning of junior high school, and I was so insecure that I wore wigs). My hair's starting to slowly grow back now. Its still thin, but not as bad as before. I have lots of tips to make your hair thicker and for it to grow. if you want them, feel free to message me

Anyways,l I hope they find out what's wrong a come up with a cure. talk soon!
   
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Re: Do you let your disability get in the way of your life? - April 10th 2013, 04:11 PM

It's good to see people don't let their disability take over their lives. Sounds like you all have a brilliant attitude.

Myself? I am a paraplegic as a result of an accident at work which caused cauda equina with elements of radiculopathy. I'm am mostly reliant on a wheelchair for adventuring outside due to pain which limits how far I can walk. But I can mobilise around my flat with crutches/without on good days. But I am very unstable. I find it hard not to let this run my life. My disability means I've gone from being really independent to rather dependent. However, people are always saying that i'm brave for going out and about by myself and wheeling independently. I am not afraid to try new things in the chair- snow sledging in one is awesome!

I say life is what you make it. You can either sit back and let life rule you or you can get up and rule life.
   
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Re: Do you let your disability get in the way of your life? - April 11th 2013, 07:39 AM

hey i feel you i am also legally blind and been to camps i go to Junior Blind of America sometimes. im hoping to get a guide dog also. i try not to let it stand in my way but yes it hard with the bullies but it is a gift we wouldnt be who we are without or visual impairment im glad i have it i made so many new friends and getting around pain in the butt man but i have the bus and this thing call access paratransit not sure if you guys have that anyway glad to find someone else like me pm me if you like sometime




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Re: Do you let your disability get in the way of your life? - April 11th 2013, 11:16 AM

Quote:
Originally Posted by Lottie View Post
It's good to see people don't let their disability take over their lives. Sounds like you all have a brilliant attitude.

Myself? I am a paraplegic as a result of an accident at work which caused cauda equina with elements of radiculopathy. I'm am mostly reliant on a wheelchair for adventuring outside due to pain which limits how far I can walk. But I can mobilise around my flat with crutches/without on good days. But I am very unstable. I find it hard not to let this run my life. My disability means I've gone from being really independent to rather dependent. However, people are always saying that i'm brave for going out and about by myself and wheeling independently. I am not afraid to try new things in the chair- snow sledging in one is awesome!

I say life is what you make it. You can either sit back and let life rule you or you can get up and rule life.
Haru and Lottie, you both inspire me. I've lived with my disability my whole life so I do not know what it is like to have just lost my sight or any other sense. I also love what you mentioned at the end of your post. "I say life is what you make it. You can either sit back and let life rule you or you can get up and rule life. " Well-spoken.
I definitely agree with you Corrina. I do not believe I would have the views I have about the world and see people how I see them if I could see. I would end up judging people for how they look, not who they are on the inside probably as do many people with sight. I am more about getting to know people and interested in them as a person way more than what they are wearing and how they look.


"i don't care your intentions. I just want you to know my self-hatred never took me where I wanted to go. At the end of the day...I can pick at the pain but I can't cut it away."
   
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Re: Do you let your disability get in the way of your life? - April 14th 2013, 07:24 PM

You guys are very inspirational.
I'm partially deaf in my left ear which isn't nearly as tough as what you guys have to live with, but it still affects how I function in school. I've had a few awkward moments where the teacher was asking me to do something, but I couldn't understand what they were saying.
It started last year due to loud music and concerts (so I wasn't born with it) and for awhile everything just felt off-balance. I've gotten more used to it, so things have gotten easier luckily. But there are still plenty of times where I have to ask someone "what?" several times before I can figure out what they're saying.
One good thing that's come of this is that I can read lips pretty well.


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Re: Do you let your disability get in the way of your life? - April 17th 2013, 06:47 PM

Everyone has disabilities of some sort. Mental or physical. Even if it's ordinary depression.

No, I don't let mine get in the way. In fact, I exploit mine and find them useful. They give me a bit of an "edge" over other people. There aren't many people who can tell me that I'm not doing well. I find that it's adversity that drives me. If everything was easy, I wouldn't bother doing anything, and wouldn't achieve anything.

Asperger's, assuming I have it, by whatever means, genetic or nurture.


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Then politics doesn't care about you either. Truth. You've got to make your voice heard, if you want to be listened to. But that's too logical for some people, so let me go a step further. Not making your voice heard, leaves other people free to hijack it by speaking on your behalf, even if they don't actually give a shit about you. That's politics. So, make your voice heard. That's not a quote from anywhere. That's just me.



Last edited by BDF; April 17th 2013 at 09:45 PM.
   
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Re: Do you let your disability get in the way of your life? - April 17th 2013, 08:44 PM

With my disability I find it hard for it to not get in the way of things. I have joint hypermobility syndrome (almost a diagnosis of Ehlers-Danlos syndrome hypermobility type) and I have to be constantly thinking about what I'm doing as the smallest thing could cause a dislocation of a joint (usually shoulders & my right hip), and could leave me immobile for a while which I do NOT want to happen.
I try to do as much as I possibly can, but I'm often in a lot of pain and unable to walk, even a walking stick could cause damage as it puts pressure on the shoulder. I've been trying to go to the gym to get physically fit as I'm unhappy about my body and want to be healthy, but recently my hip has become a lot worse and find it hard to even go swimming now.
It affects what jobs I want to apply for, as I have to take in consideration how much I can physically do, and the jobs I enjoy doing require at least some sort of physicalness. It is very frustrating indeed, but I know that actually I don't have it as bad as other people do. I'm not wheelchair bound, I can walk some distance with some help, and I will have a partial dislocation once or twice a month and maybe one full one every few months. I have to make the most of what I CAN physically do rather than focusing on what I can't, which is hard, but do-able.
   
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Re: Do you let your disability get in the way of your life? - April 18th 2013, 11:59 AM

Well, I have ADHD and issues with anxiety, so obviously when I am really stressed out or something it can affect me a little but overall I can manage it. It's definitely not as hard as being legally blind. Its inspirational to hear you are so positive about it.
Would you say that despite being legally blind that your capable of having a job and such? I ask because I have another friend who is legally blind and doesn't work and lives off of disability. It kind of bothers me because I feel like she IS capable of having a job, it would just have to be one that accommodates her issues (and I can think of a number of them) and I have never felt comfortable contradicting her choice not to work (because I can understand her need to be positive that she can afford her medications for other health so she'd need a good paying job and/or a job with health insurance) but i've just always wondered if it WOULD be possible for her to work and it sounds like you might be able to relate the most




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Re: Do you let your disability get in the way of your life? - April 18th 2013, 04:03 PM

Sometimes I do, although I try not to.

I have Fibromyalgia, a muscular skeletal disorder. There are days when my body is all bruised and discolored that I don't leave my bed. Some days I can't even move certain joints. I'm happy to say that I'm currently in remission

Sometimes I let my Asperger's get in the way. I have a huge problem with communication face to face, so I just stay quiet most of the time. I sometimes get so nervous to the point where I shake. Other times, when I get flashbacks, I tend to freak out.

Other than that, I try my hardest to go on everyday without letting my disabilities get in my way.


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Re: Do you let your disability get in the way of your life? - April 18th 2013, 07:03 PM

Quote:
Originally Posted by ~Wallflower~ View Post
Well, I have ADHD and issues with anxiety, so obviously when I am really stressed out or something it can affect me a little but overall I can manage it. It's definitely not as hard as being legally blind. Its inspirational to hear you are so positive about it.
Would you say that despite being legally blind that your capable of having a job and such? I ask because I have another friend who is legally blind and doesn't work and lives off of disability. It kind of bothers me because I feel like she IS capable of having a job, it would just have to be one that accommodates her issues (and I can think of a number of them) and I have never felt comfortable contradicting her choice not to work (because I can understand her need to be positive that she can afford her medications for other health so she'd need a good paying job and/or a job with health insurance) but i've just always wondered if it WOULD be possible for her to work and it sounds like you might be able to relate the most


Hi,

I know this question was directed towards Mila most likely, but I thought I would give an answer.
It is definitely possible to get a job even if someone is legally blind or completely blind.
I know adults that are blind that are working, married and have children. Being legally blind does not limit a person much, a lot of what someone can do while being legally blind is affected by their self-esteem and confidence in what they can do or cannot do (in their opinion). People who cannot see or who cannot see much, can do many things and be extremely successful if they apply themselves, are connected to resources/agencies that can help them and if they have positive supports, that helps with them being able to succeed at any goals they would like to accomplish: such as getting a job.
There are work experience programs that are specific for the blind so that we can learn skills and get training in how to write resumes etc.
Also, if in the United States, it is possible to receive disability while having a job if you are blind so long as the person is making under a certain amount of income: Social Security Administration.
It is definitely possible for your friend to work if she gets the proper training she may need (technology skills etc.) and if she is connected to someone through her states commission for the Blind (or similar organization).
If you are not in the US, this may not apply. I only know how things work here.
Hopefully this is helpful and if you ever need anything, you can PM me and I will be glad to help.


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Re: Do you let your disability get in the way of your life? - April 19th 2013, 07:55 PM

Hi there

I am profoundly deaf (that means completely, no hearing whatsoever) and I can't use hearing aids.
My hearing nerves are damaged by tumors called acoustic neuromas.

I try not to let the deafness get in the way. But it is difficult ordering in coffee shops, asking for directions etc
I am prone to shying away ... but I have good friends who I love seeing, they always make sure we do deaf-friendly activities (like seeing a movie when subtitles are available!)
I still dance at parties even though I can't hear the music (I probably look like a right prune )

The deafness does cause me to become upset, I often feel like i'm missing out as I used to be hearing so I miss music, voices etc

I suppose a benefit of deafness is it;s driven me to learn sign language




I'm a superstar because I do pageants!
   
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