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ganked from no_pity

1. If you could re-live your life without having your disability, would you?

Before kids, I'd have said no, because it's shaped who I am. Now it depends on the day. Sometimes it sucks not being able to do things I want for them.

2. Do you want people to show interest by asking personal questions about your disability?

I have no problem with people asking questions if they're curious. However I wouldn't like someone asking me questions of any kind just to show interest in me.

3. What is the hardest thing in life for you to do?

Its hard for me to drive, to write, and to eat. It's hard for me to tell people that I really can’t do something and to ask for help, especially when it might be easy and simple to other people… and it isn’t for me. I like feeling independent. I like to feel I can do a lot and I can do a lot.

4. What is the hardest obstacle that you have to overcome often?

Being treated as mentally retarded. Getting over feeling ashamed of having a disability and needing help

5. Do you resent people that try to help you?

No, I can't say I resent people. That's too strong a word. Mostly I appreciate it. I get irritated when people don't ask first or talk to my husband or other people as though I'm retarded. I also get a little irked when people give me medical information without knowing much about my disability.

6. Would you rather do things on your own?
Yes, but I'm learning how to ask for help when I need it.

7. Do you feel any anger towards God because of your disability?

Well I don't believe in God with a capital G. But I'm not angry at anybody for my disability, no. I think this question is rather ableist. Do you feel angry for your gender, race, etc?

8. What do you dislike the most of other people around you (ex- people staring, pointing, etc)?

Whispering,staring, acting as if I'm not disabled, but playing some kind of game. I've had people say that I must be into BDSM because my SO helps me! Implying I can get over my disability if I take some herb, do accupuncture, relax etc., Not understanding that being albebodied is a real privilege.

9. What is the best way for us to help you?

I don't really like this question, because who's "us" and why would I need help from them? The implication of this question is that everyone else but me is able-bodied, and in fact one of the most important things I've learned is that many people have disabilities of various kinds that are largely hidden and not talked about. In this era of modern medicine, most everyone is supposed to be healthy, but in fact many people have serious life-alterating lifelong health problems. So I guess the best way you (generic) can help is to speak the truth about your own issues.

10. Do you feel awkward when you are around people that are different than you?

I'm different from everyone I know. My disability is not the only thing that separates me from others.

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Comments

( 2 notes — Leave a note )
poets_hand
Oct. 9th, 2006 11:21 pm (UTC)
Thank you for this glimpse into what it is like for you. My own disability is hidden, and most people are more annoyed by it when it shows its head than caring, curious, or otherwise. I wouldn't really know what it's like to go through having a visible disability, so I appreciate your insight.
goldenlily
Oct. 10th, 2006 12:02 am (UTC)
Thank you :)

I am truly interested in people's disabilties. I had a lady with spina bifida in my class last semester that was serious enough to put her in a wheel chair. She was however very intelligent and very able in so many ways. She commented that I always discussed both sides of the issues in my classroom about genetic disease.

In that light, and because this is disabilities week and a week we (my dept and I) are starting up a movie night of biology topics, would you ever choose genetic manipulation to get a 'perfect' child knowing all that you've been through? Not perfect in the sense of image perfect, but perfect as in no genetic disorders of any kind? We're showing Gattaca and we're going to be asking them this question and asking them to think about the positive things and the negative things, but I'd be interested in your reply. On the other hand if you don't want to answer, please don't, I'm just curious. :)
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