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.

It's Blog against Racism week. Details are here.

I'm a disabled Anglo Burmese woman of above average height. I'm married to a Chinese American man of average height.

The worst way I experience racism is when I've been mistaken for Hispanic and get treated badly. Along with this assumption is frequently the assumption I can't speak English, and the person speaks to me in loud patronizing slow tones or tries really bad Spanish. However as soon as I open my mouth and my slight Queen's English accent comes out, the person realises I'm not in fact Hispanic. That may be part of the reason I retained a little accent, but if so it was unconscious.

The main way I experience racism is white Americans often assume I'm white, because I have relatively pale skin (not white but a little lighter than most East Asians) and I'm tall. Sometimes African Americans do also. That unconscious assumption that everyone is white dovetailed with my childhood discomfort with my own race. There's much about my Burmese heritage I don't understand and most Americans have never even of heard of Myanmar. I used to feel bad about this, that I wasn't Burmese enough. My brother and sister are both several shades darker than me, darker than most East Asians, unmistakably a non-white shade. Then I realised that beyond this set of folks, other people knew I was multi-racial. They might not get the Burmese part, but they knew I wasn't white.

And I'm afraid when people do know something about Burma, their characterization of my mother's people invariably grates. They describe them as happy or loving life or backwards, terms you'd use to describe children. Yet before college I didn't identify as a person of color.

But I also see that it's hard to recognize the privileges one has. I went to a womyn's music festival and yes woman was spelled with a 'y'. At a concert, some women of color were dancing in front of some white women in wheelchairs. The women in wheelchairs asked the women of color to move, because they couldn't see. The wheelchair seating was limited to a specific area. The women of color called them racist and oppressing them. Finally a woman in a wheelchair managed to get a guard who escorted the women of color to another area. Later one of the women of color complained to me about their "ill-treatment". She was totally shocked when I not only took the women in wheelchairs side, but that in fact she was being incredibly ableist not to see how far from being oppressed she was abusing her able-bodied privilege to oppress others.

But in many ways my self-image has changed a lot. I feel a lot more comfortable identifying as half Burmese. I can see more clearly the culture my mother passed on to me. And in some ways right now I'm the ideal Burmese woman.

Yet this has not changed people's assumptions. Most people who know me say my daughter looks a lot like me. However she has straight black classic Asian hair. My hair is a couple shades lighter than black and wavy. Once I was asked if my daughter was adopted! Others would ask the question "Where does your daughter come from?" and look surprised when I said "From me". Now that my son has been born and he has dark brown hair, I rarely get asked if my children are my birth children. Ironically other than hair color and skin color, he looks a lot like C.

Earlier in my life, I would feel offended or worried that people think my children don't belong to me. Now I think it's funny and reflects their own silly assumptions. I accept my role as someone who can pass as both white and ablebodied not because I am either or get to bask in privilege, but because people fail to notice the obvious due to their own blinders. At some point, another family member shows up (besides C), or I have to eat, and the gig is up. I get tired of speaking up sometimes and I haven't had much energy to do it lately, but I do still speak up instead of remaining silent. That's the best I can do right now.

But actually I do think I have a tremendous amount of racial privilege that Americans don't talk about much. I profit every day from other races in the Third World including my mother's native country. The US spends billions of dollars arming oppressive regimes who kill and rape people. Billions of children starve while my country and other rich nations do very little. The Gates foundation leads the fight against basic African diseases. I think it's shameful it has taken so long and it takes a software engineer to wake up the Western world. The equivalent masskiller European diseases were wiped out or controlled in the beginning of the previous century or earlier. I buy goods made by people who will never have access to the infrastructure, education or goods and services that I do simply because of where they were born. I know I contribute to the problem by not paying careful attention to where I buy things and that my government's own policies contribute massively to the problem. And most of the time I don't give it a second thought. I take it for granted my numerous privileges like running water, a tv, and basic sanitation. Only sometimes do I remember shocking things like if Little T had been born in Myanmar, he would not have survived.

Pulled from kynn



Ironic that Google has this nice logo in Braille, but you can't create a login if you're blind. You know those verification things that verify that you're a legit user. Well if you're visually impaired, you can't use them. Most major Internet companies including Yahoo, have an audio option. Not Google. So please sign this online Google Visual Verification Petition to get Google to make their site accessible. The petition asks Google to follow their mission statement and "not be evil" to blind people.

I cried on the way home from Little T's hand apt, because the hand surgeon told me that Little T's left arm probably wouldn't improve much. I wasn't going to cry. I was going to just tough it out. Then I thought to myself "If I were my friend, would I think it was okay to cry?" So I cried. Not as much as I thought I would. I didn't have any particular dreams for his arm as such.

It did really hurt to hear that part of the cause might be brachioplexus. I'm still letting go the small voice that blames me for not making the horrible OB do an ultrasound on Little T's entire body and not just his head. When I was admitted, the nurse examined me and probably felt his arm and asked for an u/s to see where his head was. The OB on duty very snidely agreed and just waved the wand briefly over his head. I had a fleeting desire to ask to see the entire body, but it seemed silly at the time, so I didn't ask. If she had, she would have seen his huge left arm, and we'd have both been spared an incredibly traumatic birth. Even if she had no, I'd have felt less regret, because I'd have done every possible thing I could. I so rarely regret speaking up and asking for what I want, but there it is.

And that reminds me of my uncle's question "How do you cope with all this?". He asked me as we were sitting at the reception of my brother's wedding, which no doubt influenced my answer: We have some choices in life, but a lot of our choices come as part of a package deal. I didn't grow up in the richest country in the world, but I choose to stay here. I chose C to be my husband. I'm happy with those decisions. Even knowing what I know now, I wouldn't want to choose someone else. I choose the entire package.

And I didn't choose that horrible OB and probably she'd have just made fun of me for asking to see the entire body and refused. I went to the hospital in labour, but not active labour, and my water had been broken for just two hours. It was also my second birth and with my first, my sack had not broken until almost when Special K was born. Even so, the OB insisted that she give me pitocin. I equally insistently refused. I said I'd go into active labour on my own. I was right. And pitocin might well have killed Little T. So I got the big thing right. She got angry with me and that clouded her judgement. I think she labelled me as a "difficult patient" and ignored her nurse who noticed something was wrong.

For some reason, the hand surgeon asked if I wanted to have another. We have thought about it. He said "It's not hereditary." I know that. And unlike perhaps many able-bodied parents, I never had the dream of the perfect child. And I still wonder if Little T might not also have my movement disorder as well. Special K doesn't appear to. I just don't know if we can handle Little T and Special K and a third child. We were thinking two kids before Little T was born anyway. But never say never.

And I realised it's so much his arm that bothers me. It's other people treating him badly. I mostly want to spare Little T a painful childhood. Because I know what it's like to be teased mercilessly because you have a disability. But at least I can provide him a soft place to land. I already know he's a very strong person and there's just something about him that attracts people, charisma if you will. I think if we can get him through all these hospitalizations in one whole piece and that's still an if in my mind, he'll be okay.

Today was a relatively good day, albeit not a very productive one. I took Special K and Little T to gymnastics. Little T and I watched while Special K mostly did the right thing. She seems to have a hard time listening to the teacher. I think there's too many other distractions like other classes and interesting equipment. In her evaluation last week, she received a few hearts showing she has learned a few things, but no heart by "listens and follows directions." But most of the time she listens and follows my directions.

And today is what I wrote answering the question "Should disabled people have children?"

I have two children ages 3 and 11 months. My movement disorder makes certain things more difficult especially since my younger one has feeding issues related to the aftereffects of chemo for his massive lifethreatening tumour.

I'm a good mom. My kids are both happy and reasonably well adjusted. Being a mom is so much more than being able to provide for them physically. At 3, my daughter can already do some physical things better than I can and she needs less and less physical care though she'll need me to drive her places until she turns 16.

I really wanted to have kids, so somehow I've coped. A lot of able-bodied people find having children difficult. In some ways I have an advantage, because I never expected it to be easy. Everyone has their limitations. For some, those limitations whether physical or mental may mean they shouldn't have kids. However I don't think having a disability, or a bad temper, or whatever your issue is, in and of itself should prevent you from having a child. I think the real questions for any potential parent are
"Are you willing to do whatever it takes to put your child/ren's needs first?" Some parents confuse needs with desires. I mean needs.
"Are you willing to change your entire life so your child/ren can thrive despite your limitations?"