What challenges have you faced because of your or that of someone you love disability?

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I’m sure everyone knows by now that Vicky (my fiance) is blind, and that I can get touchy about the ways in which some people buy into the myths and misunderstandings about blindness. At the risk of being a bore, I’ll just briefly rehearse the familiar catalog of my feelings about this:

We think that her blindness is fundamentally an inconvenience, which does not limit her ability to achieve things or to perceive things as much as you think it would. She knows who is attractive and who isn’t, who’s a man and who’s a woman, who is Asian and who is Black, who is sad and who is happy, who is derelict and who is neatly groomed.

Blindness affects very little in terms of her ability to do things; it just changes the method. She sails, competitively. She downhill skis; she rides horseback; she plays baseball (and watches baseball games at the ballpark and on TV) she reads, she is a computer programmer, she has a Masters Degree, she is a psychotherapist. NONE of these facts are extraordinary, or signs of courage, or something to oooh and ahhh about. They are simple, quotidian facts and most blind people can and have accomplished the same sorts of things. She and they and I are sick of the idea that some sighted people have that these accomplishments are somehow special or heroic. They are not. Sighted people are trained to expect that it’s harder for a blind person. Not true.

What is hard, is to be the victim of low expectations, which most blind people are. You imagine yourself trying to do something with your eyes closed, and you think, Oh, she could never do that. Well that’s not how it works. Being blind is not just subtracting a sense. Being blind is subtracting one sense, and then using many adaptations, skills, tools, etc. to compensate, thus making you quite competent.

That blind person there does not need your help to cross the street or pour a cup of coffee or avoid tripping over the hose on the sidewalk. That blind person does need you to offer him or her a good job in his or her area of expertise, because most people won’t.

</Rant>

@pdworkin thank you for teaching me this, I was definitely definitely going to say ‘wow, sailing and skiing, wow’ – in that all these things, well, I can’t imagine HOW it’s not more difficult for a blind person to do and that I do think it’s admirable that she does them anyway

my girlfriend is pretty LD. Its taken her much longer to understand things that normal people get easily. Like, she took a class 3 times before she passed it.

Ive tried my best to remain calm and walk her through things and to keep her calm when she doesnt understand. Its hard, but i keep trying just because i dont like seeing her unhappy.

tho with this, does anyone have any idea how to increase general comprehension?

Right now our biggest challenge is the special bus service for the disabled that our city provides to eligible residents. The challenge isn’t about us using the service (we aren’t eligible because I can drive, although when I had foot surgery and couldn’t drive for six weeks four times over, they still said we were ineligible), it is how the drivers on that service perceive the world.

Three days a week, my husband and several other disabled folks have dialysis at the local dialysis center. While most can walk slowly with a walker, none can walk across the parking lot or deal with curbs well. These people all have an able-bodied family member to drop them off and pick them up so they aren’t exhausted by getting in and out of the center. To make it easier for all the patrons the center has a covered accessible passenger loading area large enough to hold six cars at a time.

One woman, who has an electric wheelchair, has to use the bus service. When the bus comes, the driver invariably pulls the bus into the loading area before the woman has come outside in such a way that no other vehicle can stop where there is no curb. She then proceeds to wait fifteen or twenty minutes for her patron to come out. If, when the bus arrives, anyone else is stopped at the loading area, the driver revs the engine and honks the horn until we move completely out of the loading area.

However, if, while she is sitting there waiting for her rider to come out, we ask her to move the bus (which is a small bus, not a full-sized city bus) a bit so at least one car can get in she refuses. Apparently, in her eyes the only disabled person is her one passenger and the rest of us tax-payers can go hang.

This is an extension of the problems cited above, where people make assumptions about others. We also have difficulties for example with attending hockey games. First, the wheelchair ramp is at the wrong angle so my husband’s foot rests hit the concrete unless I pull him up backwards, and secondly, although there is an area of accessible seating, most of the ushers insist that only the disabled person gets to sit there. Even though my husband might need some assistance, they want me and the kids to go sit in our “reserved” seats. A few will allow me to sit with him, but then my kids have to go sit elsewhere, which I am reluctant to allow because my son is bipolar.

I suppose this still all boils down to getting people to stop making assumptions and to start using common sense. The likelihood of that happening is very slim, unless it becomes a required class in high school for every single student to have to spend a day in a wheelchair, a day with blinders on, and a day with ear plugs, or something like that. Until you have really had to live with differences you really don’t comprehend how the “normal” environment affects those people who are “different.”

My mother has MS. I went from seeing my mother be able to do everything to her not being able to sit-up in bed.

As a tween and up, I was the only one in my immediate family to try to help my mother. (My father was a total ass and my sister was too.)

I used to take her shopping (I always knew what I was getting for Giftmas and my b-day), we’d go to the movies together, and when my dad took off and mom had to go into a nursing home, I was the only one to go see her or do anything for her.

I think growing up with a disabled mother gave me a unique view of disability. I know that they need assistance but most don’t want to feel like a burden or that they are being pitied. I never assume these people need or want help, but I always ask. And I don’t coddle them, as if they are helpless and needy.

My boss’s son came to work for us during the summer and he is paralyzed from the waist down. I joked with him once about needing a beeper on his chair for when he’s going in reverse, and I never assumed he needed my help, but when I saw him struggling I always offered to help.

When he went back to college he gave me a card saying how it was nice to meet me and such. He also said that he appreciated the way that I looked at him and treated him. He said ”...most people look at me with pity or disdain. You look at me and treat me as a regular person.” (I quoted b/c I still have the card.)

My brother is developmentally disabled. Darwin raises a good point. When we separate the disabled from the rest of the population in order to give them appropriate services, it creates a divide. If we’ve spent time around people who are different from us it feels normal. Many people are uncomfortable around disabled people because it’s unfamiliar to them. My brother was lucky enough to attend mainstream public school with the help of an aide. Though his schoolmates were probably frustrated by it sometimes (like I was), they were very compassionate with him, and as adults they’ll have a more evolved appreciation of differences (like I do). And of course my brother took great pride in being included. One of my proudest moments as his sister was watching him receive a standing ovation from his class as he received his high school diploma. I was thrilled not only for him, but for the kids who got to share in his achievement.

People often think because I’m not blind being visually impaired doesn’t greatly affect my life. I can’t drive, I’ll never be able to drive, I can’t read fast food menus, I can’t always read teachers’ notes, I have to ask others to read things for me on occasion. I guess it’s mostly lonely because there isn’t good public transportation here and I live a bit out of the way so I spend most of my time alone.

You can’t look at me and know though that I wear the highest prescription possible in contacts. That’s what’s hardest, most people can’t get a good perspective on what my vision actually is.

I worry about the future too. I worry I won’t find a job and be able to pay for my eyecare (I see two ophthalmologists once a year, and contacts and glasses are considered medically necessary for me). I worry I won’t find a way to and from that job.

So in terms of understanding, I only wish people would understand just because you also wear contacts doesn’t mean you have shared experiences with me and that just because I’m not obviously disabled doesn’t mean there aren’t challenges. In addition I also have a fine tremor that has no medical explanation. Please don’t ask me why my hands are shaking. I can’t tell you why, and it embarrasses me.

@hug_of_war: I hope you are in touch with your local Commission for the Blind and Division of Vocational Rehabilitation. These agencies are in place to ensure that people can get accomodations to have job training and services that might not be covered by their insurance to help them function in the world, and especially in the workplace where Voc. Rehab. is concerned.

However, as others have noted, even those counselors can have low expectations. One of my patients has lost his vision as an adult, and he has a slight hearing loss. The store where he has worked for 20+ years just closed, and he has been getting a runaround as to which agency is supposed to help him with what. He has gotten the impression that none of them has had a visually impaired person that wanted to work before, so they don’t know what to do for him.

I hope you are able to find resources to help you.

@pdworkin The reason so many sighted people, myself included, don’t get it is because if we were to lose our sight, we would be lost, and most of the things we do every day would simply cease. Getting re-trained would be an option, but the loss would be a great one.

@YARNLADY You seem to have other questions. I encourage you to ask them in public.

On a very practical level I can’t believe how many places are not wheelchair accessible, even in our post ADA world. There are tons of places my boyfriend can’t get in to because there are no curb cuts, lots of steps, doors without automatic openers, etc. I find that incredibly frustrating.

I find it interesting how patronizing people can sometimes be in speaking to a disabled person. Some will speak loudly or slowly, I’ve even had some people ask me what is wrong with my boyfriend when he was sitting right next to me.

I think a lot of us were taught as children not to stare. The effect of this seems to be a lot of people looking, looking away really fast, then looking again, and again and again. It is just silly really. My boyfriend has a huge personality and is so much more than his wheelchair, anyone who has ever bothered to speak to him knows that. Another thing I find interesting is how many people we have met together who wait until he is out of the room then ask me what happened to him. They want to hear about how he came to be disabled (car accident), his injury level (C5), and sometimes other things that are just not appropriate to ask (the answer is a resounding yes)! Many of the disabled people I’ve known would appreciate being asked questions about their disability – not stared at or avoided.

Yeah, we get a lot of, “what will she have” from waitresses, as if blindness interferes with hearing and speech, too. I am also amused that in nearly every restaurant, fine or seedy, we are handed 2 menus. So far only one place has offered her a Braille menu, and that was Applebees, where the CEO/Chairman is on the board of Seeing Eye.

@hug_of_war – I am sorry to learn of your difficulty. My husband is legally blind in one eye, and, as he jokes, can’t see out of the other (it is correctable to something like 20/200). He cannot drive, can no longer read science fiction (even large print is too small), and for a long time could really only listen to the television. Even I, who live with him, wasn’t aware of how he felt really until I brought home a new television for him that has a 42-inch screen. He can actually read the on-screen guide now!

My kids’ guidance counselor is also legally blind, but thanks to a lot of handy-dandy devices and an indomitable spirit, most folks never know until they see him out with his cane.

I, too, hope you can find resources to help you do what you want to do.

My own mind was the biggest challenge. Once I realized it was not about me, but about how I could help, it stopped being a challenge, more of a mission to assist.

My son has been diagnosed with “learning disabilities.” I guess any time you’re slower than average on learning something, it has to be a disability. It makes me lose respect for the diagnosis. I guess it allowed us an excuse to get him extra attention from teachers, which is nice, but who is to say he wouldn’t have picked stuff up anyway, just later than other children?

My son had a similar diagnosis. After a time I began to accept that it was more difficult for him to learn certain things as easily as his peers. He simply worked harder than they did, in order to keep up. The advantage of the diagnosis was that for critical exams he was allowed more time, which he carefully used. All in all it was a good thing.

He has since graduated from college with a BFA, with honors.