A Follow-Up on the UU Thing

My post a few weeks ago on What is bugging me about UUism (aka my church) got a bit of action, mainly from this Chalice Chick woman, who as many people are (especially UU's) has good intentions but no friggin' clue about disability issues. (See her lovely post on the Terry Schiavo disaster.) I also got contacted by a UU minister who has CP and has written an adult religious education curriculum on disability social justice issues, which is being sent to me as we speak. She made me feel like I was not crazy because she agreed with me wholeheartedly about UUs and their complete ineptitude about disability.

Today, I went to church for the first time in a few weeks. The kids love the nursery, which is half the reason I go. I'm usually not too bothered by going places/doing things without D, but today I kind of was. I missed him there with me. I was tearing up throughout the service for some reason. I think it is what I call emotional incontinence, which we all get from time to time. Emotions just leak when you least expect it and for really no reason. Sometimes that hour I sit in church is the first and only hour all week where I get to sit in relative peace with no kids, father, D or work to keep me busy. Then it's like, "oh, I guess I'll check in on myself and see how I'm doing, now that I have a minute." And sometimes I'm not doing well.

One thing that bothered me, and this is really selfish and stupid of me, was this woman who came up during the "candles of joy and concern," where you can light a candle and, as implied, express a joy or concern. She introduced herself, and then said she was better known as the lady who was hit by a bus. She was a middle aged woman who walked with a limp. I did not know her, she said she was fairly new to the congregation. Apparently, she was badly injured at some point being hit by a bus (I don't know the story) and recently she was given thousands of dollars for her medical expenses and also given thousands of dollars worth of free dental work as a result of a benefit that was held for her. (This was not specifically a UU benefit, I gathered, but many UU's participated.) My emotions about this confuse me.

1. I'm happy for her, that she is recovering and that she got the help she needed, both financially and otherwise.

2. I wonder why D and I don't ever get that kind of help. This thought makes me uncomfortable. What the hell DO I want? It's not so much the money, I think, no. I think it is the support. I don't honestly think I could take people's money in a benefit like that. First of all, I don't think I could ever pay it back. Second, I would feel like D and I would have to stay free and clear health-wise for the rest of our lives and never have another problem again...and I know we can't do that.

3. Maybe she asked for it and accepted it, and I/we don't make people comfortable enough to do that. I don't want a benefit. I don't want that kind of attention, and that kind of charity. Yet, I want that kind of support. I want the support without the pity. I want the support and friendship without the sort of power inequity that comes from that. I think for her, she was in this temporary situation of need. She became disabled for a little while (as far as I can tell.) She and everyone else knew that this was not who she really was. For she was going to recover and go back to being nondisabled. To go back to being an equal.

Assistance is a funny thing. Read chalice chick's idea that disabled people are burdens. (And the implication that nondisabled people are not.) That if you are lacking the ability to do whatever in one area, you couldn't possibly be able to make up for it in another. You automatically are not on an equal playing field so your life has lesser value. Most disabled people I know can run circles around nondisabled folks in such areas as resourcefulness, multitasking, advocacy, public relations, managing risk, perspective, prioritizing, etc. Even many people with cognitive disabilities have skills that nondisabled people don't have. I once worked on a grant project where I was the administrative support for a woman with cognitive disabilities. I can't tell you how many times we sat in meetings full of PhDs who couldn't get past the politicking of a situation to find a solution and she would break through all that nonsense and tell us the exact simple and logical next step to meet our goals. Seriously, without her, that project would never have been as productive as it was.

Anyway, the church confuses me. Life confuses me. My in-laws confuse me. All about this 'support' business. Why can't we get the usual support in life that people get without the pity attitude. Why did I spend thirteen plus years taking care of my own damned self, and supporting D in taking care of his own damned self, with a little family help along the way, yet have it be slapped in my face when I became PG? "Oh, we did the dishes for you and gave you some rides the last couple of years. So I suppose now we have to raise your children? Because YOU can't do it! You're disabled! What are you THINKING! You needed HELP! Let's not talk about all the help we give to the other daughter-in-law who can't even sleep alone in her own home when her husband is out of town. That is just a little cute personality quirk of hers. You are disabled! You are responsible for none of your accomplishments because we assisted you with 2% of it."  I'm hard on the in-laws because they are just such an in-my-face example of this...but they are not unique in this. This culture surrounding disability is pervasive.

So back to the UU's. Everyone told me I should go talk to the minister about my concerns, so I tried today to just set up a time to talk to him about it later. To be fair here, I will tell you that our current minister is an interim minister that just started a few weeks ago. He is also a gay man and I mention this because he said something in his sermon today that gave me hope that he would understand me. He talked about a youth group for gay/questioning teenagers that he started in the 70's. How back then, this was just not done and the church was afraid it was going to get sued. He said it was tricky because they needed parental consent for everything, yet some kids needed to come to the meeting without their parents knowing, and how they had to arrange that. He said that some kids said that their parents told them that they would understand if the kids felt they needed to commit suicide. And there it was. There was the link I thought I had with him. Parents devalued their children so much for the fact that they were gay that they thought their lives weren't worth living. Imagine. How much all of you love your children. What condition could they possibly have that could make you almost go so far as to wish their death? Gayness? Disability? Where do you draw the line? I mean, even Jeffrey Dahmer's parents still cared for him after he was convicted. This is the culture that surrounds disability all the time. Death with dignity. Wrongful birth lawsuits. Abortions for such things as Down Syndrome and Spina Bifida. My internet friend, Shannon, mentioned to me once that she didn't really want a "gay gene" to be found because then parents would start aborting their gay children.

But the issue is the value of life when that life doesn't fit so well into the mainstream culture. And this is where I thought I could connect with this guy. And I think I still can. I think he is an intelligent, open guy. But my conversation with him showed me that I have a LOOONG way to go. And should I push that with an interim minister, just to start all over again when the new person comes? Anyway:

Me: I wanted to ask you if sometime we could meet and talk about some disability issues?

Him: "Oh. Is something wrong with the ramp?"

Me: No, the ramp is fine. The door is locked sometimes, but that's not what I really wanted to talk about specifically.

Him: Is it parking? Is something wrong with parking?

Me: No. Parking is fine. I walked here anyway, I don't have a car.

Him: Why don't you have a car?

Me: I'm visually impaired. I don't have a driver's license. With D in the hospital, I don't have access to his car. But we have been able to park here fine.

Him: You are visually impaired? I would have never known! You get around so well! (Note: I know he is trying to be polite here and compliment me, but this is not so much a compliment. It's like saying, you don't look like a blind person (inferior), a blind person bumbles all around and you don't do that. You PASS as sighted. --I don't always pass as sighted, BTW.-- It's kind of like, to use an overused analogy, going up to a light skinned black person and saying, "You're black?? Oh! You don't look black! I never would have known! I don't even think of you as a black person. You totally could pass for white! Lucky you!)

Me: Well, it depends on the day and stuff. Anyway, I was wanting to more talk about disability as a ---(I was going to say social justice issue).

Him: So, is there something else that I can take care of? How's the FM system working?

Me: (Since this wasn't turning out to be a good setting to talk to him about this, and since another lady who uses the FM system just complained to me about it,) Actually, it doesn't work. (went on to explain the problem.)

Him: Okay, we'll take care of it!

I might try to email him again at some point. I'm not going to break my back timewise on this issue, but I feel like it is only fair to speak up and take some kind of action rather than just bitching about it on the internet. Again, I think they have good intentions. I think though that they go off so much on praising themselves for how good they are doing sometimes, that they forget to stop and just...LISTEN.

(Brainstorming here...) A list of disability social justice issues that I would like people to be educated on:

• Just general oppression literature. i.e. pedagogy of the oppressed and "the birdcage" model of oppression.
• Basic medical model vs. social model paradigms of disability.
• Basic "how disabled people do things, and no, we don't all do it that way." And, yes, despite everything, they do have jobs as doctors, lawyers, teachers, nurses, EMT's, accountants, everything.
• the "mockingbird" effect. This is a term referenced from the book "To Kill a Mockingbird," where a black man could not get a fair trial, not so much because of the LAWS but because of the prejudice of the jury and the culture surrounding race. Many disability issues are compromised by the culture surrounding disability, such as:
• Abortion. I am pro-choice. However, the mockingbird effect affects and distorts the information women receive and decisions women make about disabled fetuses.
• "Death with Dignity." Again, a mockingbird effect issue. This isn't about the real deal terminally ill. This is about your "Million Dollar Baby," Your Terry Schiavo, and how economics and politics play a part in these decisions. A note on Terry Schiavo: Disabled people weren't mad about the religious right aspect of this case, nor whether she would ever recover, it was because the LINE moved. The LINE that allows a "brain dead" person to be allowed to die is moving closer and closer to the not-so-much brain dead. Because of the economics and prejudice of disability, this concept is frightening to many people with disabilities.
• The institutionalization issue and false imprisonment. MiCASSA and other homebound legislation.
• The health insurance discrimination issue. No disabled person will be underwritten and w/o dependable insurance, many disabled people can't work
• The severe watering down of the ADA by the Supremes and why Clint Eastwood is a Dick.
• "Quality of Life" and myths about disabled people's lack of it. AKA, If you can't piss and shit in the toilet like a dignified human being then your life isn't worth living.
• Ramps and accessibility beyond ramps, information access. And, "quit putting your damned grocery carts in the disabled parking spaces so Lisa has to get out and move them all before we can park," and other rants.
• Unemployment and the tricks employers use to get out of the ADA.
• SSA and the disincentives to working.
• Special Education. Lots of money, lots of labels, lots of segregation, lots of paperwork, and little expectations. (Or, How I taught a blind 19 year-old to tie his shoes and spell C-A-T while he taught me about Glasnost and Perestroika.)
• Disabled in the prison system.
• Housing. There is none.
• Christopher Reeve and the "cure" crowd.
• Marriage, family, sexuality. (They do exist.)
• Self Determination and people with cognitive disabilities.
• How the homeless problem would be reduced dramatically if there was anything out there for people with mental illness.
• Animus and hate crimes and "nobody is against the disabled"
• Caregiver abuse, i.e. the Kansas sex slave group home that no one investigated for 17 years. (Not to mention my little run in with the law regarding the mentally retarded child charged with second degree murder. I'll share that story sometime.)
• Jerry's orphans and the problems with disability charities. Support vs. charity. Natural supports.
• Human rights violations around the world, murder on a daily basis.
• Disability and poverty and the difference between the two.
• History of hate and fear, i.e. disabled people as possessed or demonic. Eugenics and the Holocaust
• Disability culture and celebrations.

Well, there's a start. That class will take 300 semester hours. Should get a lot of people to come to that! Sigh.

Comments

[alexandra]

Wow Lisa - that is a good list and a lot for me to think about. I'll sign up for at least a couple of semesters. It is interesting that the minister was so focused on the mechanics of the church instead of your spirtuality. I look forward to hearing more about it.

[cluttergirl]

Maybe just starting with that list on a paper... dang. It is the start of an education just there... it opened my eyes a wee tiny crack, and given the conversation with your minister, it would open his eyes a tiny crack. Maybe print out that part and give it to him? I don't think any of us realise just how incredibly sheltered and ignorant we are. Knowing you know nothing is a tiny start.

[shannon]

Holy Crap, Lisa!
People (um, me...) could learn a lot just by reading your list.

Seriously, you should start a separate blog just for going through that list.

Seriously. I know about a zillion people who ought to be required to read it.

[Emmie]

Thanks for blasting my ignorance a bit. I think I needed it. There's a woman in my church who is quite physically disabled. She has something that she says is similar to MS but much rarer and more painful, and she uses a walker. She gets a lot of support, but she speaks very slowly and people aren't always as patient as they could be. When I had really scary pregnancy complications, people from that church fed us, offered us money, did errands for us, cried and laughed with us, the entire 14 weeks I was on bedrest. We still get help from church members and rarely have to ask for anything. Your post really makes me think about what it might be like for the woman I mentioned. I know she gets help, but do people offer? Do they do it cheerfully? Do they recongnize what she contributes (quite a bit, actually). Do we remember to unlock the door to the damned elevator entrance? I think people (myself included, unfortunately) tend to view being inclusive as a checklist. Got the elevator, check! Got the sound system, check! Mention Black History Month, check! I should be able to do better. I'm sorry you have to work so hard to be heard and included.

[shannon]

Okay, did you hear that story on All Thing's Considered tonight about the nursing home euthenasia after Katrina? I was thinking of you and D. the whole time. Creepy, creepy, creepy.

[Lisa]

Hi, Shannon

Yeah, I’ve heard several stories such as these. Although I feel for everyone in the horrible situation who felt that this is what they had to do to ‘help’ these patients, there still was no evacuation plan in place for these residents. Also, most people are saying “well, they were just old and sick people who would have died anyway, so what does it matter.” Or, “Well, that was the ‘merciful’ thing to do” etc. I doubt there will be much repercussions or outcry about this. As someone who watched my mother die for ten months, when there is no hope for survival…it starts to really matter how someone you love dies. You want them to be treated as a full, living member regardless of their health, and you want their death to be as natural and peaceful as possible. You don’t necessarily want it left up to someone’s decision that you (or the person dying) has no control or say about. Regardless, many of the hospital patients may very well not have been dying or DNR anyway.