What do we really want?

What do disabled people really want? I'm asking this because the answer given by most non-disabled people on DU lately seems to be 'easy access to death' and sometimes 'cure' (which, while some people want one, doesn't seem like a priority in most of our lives unless we have something fatal). In fact I've read some things that say that death and cure are the only two acceptable states to most non-disabled people; people who are somewhere in between makes them uncomfortable.

I'm guessing what we really want is something like:

* Enough political power to make changes for ourselves
* Freedom from other people's decisions that our lives aren't worth living
* Freedom from other people's other invasive decisions about our lives
* Freedom from institutionalization and other involuntary segregation
* Removal of barriers to participation in everyday life, both cognitive and physical as well as social
* Living in something other than poverty
* Not to be judged and treated as lesser beings just because of what our bodies and minds can or cannot do
* Recognition as political beings rather than simply medical objects
* Not to be cast aside when it's economically convenient to others to do so, and not to be viewed as economic burdens (and the least important ones, so that we get accused of taking up valuable resources)
* Assistance with whatever we need assistance with, but real assistance, not condescending "helpers" descending on us with their own ideas of what we need (this includes medical care where necessary but also other things, and need not be in the formalized form it's in today)
* Recognition that all of us, that means all, are fully human, not soulless objects or vegetables

And so forth.

So far, what we seem to get from other progressives is pity, "I'd want to be dead if I were you so I'll make sure you have easy access to death," terror at the thought of living like we do, occasional nods to the idea of healthcare, all sorts of destructive plans, and complete lack of recognition of what our lives are really like. Destructive lack of recognition. They have a lot more power than we do. Anyone have any clue how we can gain the political power to control our own lives and make it so that nobody can do these awful things to us anymore (and so that it doesn't just become "physically disabled people making all the decisions for cognitively disabled people" or any other caste system)? It seems that currently we have little to no power and little to no recognition of our true issues, while other people deride us for speaking up on our own behalf.

Why don't you try reposting in GD or something that will get more visibility?

...to get opinions of other politically aware disabled people before throwing it out somewhere where we're likely to get drowned out by the ableist responses of what looks like the majority of DU these days. That whole "You're better off dead but it's for your own good" thing. :eyes:

I just found your post to be well written and generally informative about a subject many people have no concept of. I didn't realize the intent was to get feedback before going to a wider audience.

I am also disabled, but rarely talk about it here on DU for many of the very reasons you listed. I've spent the better part of two years trying to come to terms with the idea that I am disabled (although I hate that term because of its' binary nature -- it presumes one is either "enabled" or "disabled").

Haven't chatted with you in a long while. Good to see ya.

I hope you are well and all things coming together nicely. Obviously I have been spending a wee bit more time back in DU. I did take some time "off" from everything too. I just got overwhelmed; had to spend some time with family things also.

Anyway, I'm back. I'm still primarily focused on the issues I spoke with you about before. This is a neat little forum to try to air them. So here I am.

Just bought a fax machine so I can start shooting hard copy to reps on the topics that are important to me and for people like these in this forum; still trying to do my well meant, but feable activist thing. If the issues aren't brought up, nothing gets addressed, no?

My computer is going in for a tune up this morning so I may not be able to respond after today...but big hugs to ya anyway..

:hug: SB aka lastxxxxxx

am very sorry to admit that "disabled people" is often a group that I myself often overlook in my studies and thoughts about how I'd like to see the U.S. progress. God, I can't imagine how it must feel for someone to say they'd rather be dead than like you. How idiotic. I think the terror of becoming disabled is because people recognize, at least implicitly, the devastating truth of your statement, "It seems that currently we have little to no power and little to no recognition of our true issues, while other people deride us for speaking up on our own behalf."

I myself am deeply ashamed and will make a conscious effort from here on out to educate myself about these issues and try to make a difference where I can. Thank you for your post.

By the way, I have noticed that "disability studies" is becoming a much more prevalent topic of study in academic cultural studies and theory. MAYBE that will translate to the political arena soon. I hope that this will happen and these issues will not remain abstract topics of discussion, as such often do in academe.

Here's one example, from Georgetown:

http://www.georgetown.edu/crossroads/interests/ds-hum/

I'm on that list. I find it very informative, though sometimes we academics have our own moments of stupidity.

disability studies being limited to abstract discussion; I meant it as an example of how the general topic is becoming more popular and included it also because of its extensive bibliography.

I was just ineffectively seconding the DS-HUM list as a good resource. There's currently a lively discussion about portrayals of disability in film going on. Even if you never post yourself, just reading what everyone else has to say is informative.

I have started rattling my cage, and I find it is paying off. My disabilty inconveniences me, mostly, but I have enough days where I am severely affected to be constantly on the look-out for accessibility and prejudice. I have to pay attention to those things as if my life depends on it, because it does.

I think your list of what disabled people want is pretty good. If it wasn't so late at night, I would try to add to it, but it sure looks good as is, so maybe it can be improved. :)

So, what to do to achieve the goals?
*Get involved with your nearest independent living center, even if you don't currently need its services.
*Always alert your employers, city government, state govt., etc., to barriers to inclusion. Demand changes. Follow up.
*When you shop, if the store is not accessible, complain. If changes aren't made, shop elsewhere.
*Get together with other disabled people. Plot to shake up your workplace or town or what have you.
*Mentor young disabled people and the newly disabled. The system is designed to make it nigh-unto-impossible to get timely assistance. Whatever you have learned is highly valuable.

I hope others add to the list!

...a lot of them seem to be around lately to perpetuate themselves rather than to provide real assistance, and to be seriously bound by the disability caste system. I know too many disabled people, particularly if they had a low-status diagnosis, who've been screwed over by other disabled people at the CILs, sad to say.

I was talking the other day to one of the ones who was screwed over in that manner, and she was saying what we need is something different. I wish my own brain was working better so I could remember what it was, but I know it was something different than a standard disability organization like a CIL (and especially different than an organization that had to base its actions on what would and wouldn't lose it government funding in any form). And not something that would serve an elite group of disabled people, but something that would consist of voices and power for all of us. But as I said my brain is fuzzy too.

If you remember, be sure to tell me. I'd like to know what it was that your friend had in mind.

:evilgrin:

...a lot of them seem to be around lately to perpetuate themselves rather than to provide real assistance, and to be seriously bound by the disability caste system.

I am posting this from a CIL that used to fall into this category until a change in management a couple of years ago.

Disability caste system: Marca Bristo at the CIL in Chicago (one of the best) tried to do some outreach to the cognitive disability community through its organization, People First. People First shot her down, because they saw CILs as only for people with mobility disabilities, or perhaps blindness. It's our own version of the classic Democratic "circular firing squad"...

...I've heard these stories from all over the country. As far as the one in Chicago, I don't know if it's the same one but I think I know a cognitively disabled person who tried to work there and found that they were being tokenized and ignored, all their protestations about cognitive access were likewise ignored and they were basically told to pretend they were only physically disabled, and there were lots of offhand degrading remarks toward people like them by physically disabled people, until they finally couldn't take being marginalized anymore and quit. I don't know if that was before or after the failed attempt at outreach, but if that was the attempt at outreach then it was about as successful as a bunch of white feminists would be by hiring women of color but only if they pretended to be white, only if they didn't mind racist remarks and jokes all the time, and only if they were then told they were the ones not trying. (Which does happen too, it's not unique to the disability community.)

The person I was thinking of, though, was in a different state entirely, and the CIL refused to serve her both because her physical disability wasn't a high-status one (she had severe spinal problems but not a spinal cord injury) and because she was developmentally disabled. And I've heard a number of stories like that from developmentally disabled people as well as people with several disabilities. For instance I know a guy over here who worked in the CIL in Berkeley and said that he would've done okay if he was either blind or physically disabled, but not both.

and the CIL refused to serve her both because her physical disability wasn't a high-status one (she had severe spinal problems but not a spinal cord injury) and because she was developmentally disabled.

What center would pull a stunt like that?! PM me with the name and I'll have my boss (former regional NCIL rep) make their lives a living hell. Seriously.

As to Chicago, there are basically only two centers: the one serving the city, and another serving its suburbs. Both are pretty good as far as I know. Could this be in a neighboring county such as DuPage, Lake or Will?

As it happens, I'm doing a self-advocacy training next week. May I incorporate that list into the curriculum?

Actually, it may need one minor correction:

Recognition that all of us, that means all, are fully human,

The current occupant of 1600 Pennsylvania Ave. NW is actually a chimp in slight disguise. Other than that, yes, we're all fully human. :-)

Whenever my childen (and now my grandchildren) used to ask what they were getting for a holiday, I would answer, "Pickles."

My husband was listed as disabled two years ago. I qualified as disabled last year, again, and again I refused to apply fo assistance.

He was already retired and on Medicare when his condition worsened and his medications and medical care are mostly covered, at least for now.

Not to get too personal, but I've been able to qualify three different times for permanent disability (three different conditions), but I do not want their help.

I did accept a WV state program for women with cancer to pay for my last surgery, but after I had the surgery and refused radiation therapy and chemotherapy, the program decided not to pay the hospital bill.

That is the problem with wanting someone to step in and cover your butt, imo. They then are able to set the terms of their help, and if you do not agree, you are worse off than before.

What do I want as a disabled person?

1. I want to have access to every building. If Madison, WI could make the downtown handicapped accessible, then so could everywhere else.

2. I want every large store to have enough "zippy carts" so that I can shop on the days I am able to leave the house.

3. I want people who use handicapped parking without a sticker to be massively fined and made to hobble along in my ortho shoes for a week.

4. I want the medical community to be forced to acknowledge my rights over my body.

5. I want the right to see my entire medical files whenever I want to, which is supposed to be in place, but is fiction in actuality.

6. And I want the Democratic Party to get off their quasi-Republican high horse and promote workshops around the country that would deal with minority problems.

Workshops attended by the legislators in each area, meeting all day long over the special needs of the "others" in this country, from disability to homelessness to race (and include all the minority races here, thank you very much, as Black issues are not the same as Indian, Spanish-speaking or Asian issues).

And I want a true platform developed from those meetings. One that actually offered solutions and would be forwarded with the same energy as that for business issues.

Which has a much chance of happening as my kids actually getting Pickles for xmas.

I want my damn life back! I want my once half-way decent health back! I want my ability to work back! I want everything I once had back!

:grr:

DTC

As I posted below, my computer is leaving this morning for repairs..so I'm doing my thing before it leaves. Oddly, I woke up thinking about some of the things you've written in your OP.

I have been kicking myself for not finding this particular forum earlier. I read in another thread by Dembones, some stuff where info was posted that I had no idea existed. I was wowed and pumped by it.

I hope those of us with disability related issues can keep this going. WE are out here and we want to be heard. We DO contribute, we have ideas, we are useful, we want to live, we have dreams and all we, at least I, ask is a few helps to smooth out a few bumps.

Each man or woman with a disability (even the aging population) has particular issues that are most important to them. Some things are important to all of us. For me it is these: Appropriate, adequate, pro life healthcare. Access to Social Services w/o all the embarrassing flak and jumping through hoops. Accessible, affordable housing (so little of it exists). Long-term in-home care so those with serious conditions don't have to be relegated to filthy nursing homes--some individuals left there to die. For those who are unable to work gainfully, a state/federal income that would lift them from near abject poverty!

I don't know what happened but when the American's with Disibilities Act first came into being, it appeared in most communities that everyone was falling over backwards to help. Employers were forced by law to accomodate the person with a handicapp in the work place. Likewies the healthcare coverage could not discriminate because of pre existing conditions. Landlords by law had to allow renters with disabilites to "modifiy" the property to make it accessible: ramps, railings..whatever. I don't see much of this happening anymore.

Shopping was to be made easier for those in wheelchairs or with no reach...aisles to be made wider and clerks to assist without complaint. City buses were to be made accessible for at least two wheelchairs at a time and the bus driver HAD to tie your chair down..today, they hate doing that. Some cities bought "kneeling" buses so that the elderly could step into the bus without having to hoist themselves up. The bus drivers were to take "sensitivity" training for these new regulations. Buses, trains, airlines were to accomodate disabled passengers. I think many still do.

Healthcare (in all it's manifestations) has fallen short. HOUSING is a CRISIS (and not just for us). I have a whole famly where two of us have mobility problems. We have been relegated to a substandard, inaccessible dump where we live right on top of each other--every one is depressed and angry. We use Section 8 vouchers and that program just jacked our rent up from $175 to $512!! My complaint is WHY IN HELL DON'T THEY BUILD HOUSING FOR WHOLE FAMILIES? Like the handicapped don't have WHOLE families or something? They aren't married with children? They don't like to own pets or have barbecues or company over? Instead, the housing authority would rather split the families up (ahem, "family values"?), send the disabled persons into a "Warehouse" solution (a "new" but tiny little boxy complex with room for just one, maybe two people to sit around all day). The rest of the extended family can just disappear I guess!

Medicare or Medicaid will not pay for many wheelchair repairs anymore (IF you can find a place in your community that even does that)

My husband was incurred a serious head injury in 1979. His symptoms are like those of a stroke victim but much more serious. He is a left-side hemiplegic. He can walk with a cane, but uses an electric wheelchair to get around town. He is rather popular because of his bright personality and bravado. Early on he worked for several diability rights programs in our state. He was instrumental in getting much needed curb cuts in neglected areas of the county and at our city college. He worked with the disabled services program at the community college and with the Elderly/handicapped commission in our community regarding transportation. Most recently, his volunteerism was focused on the Metro/City bus lines directing the sensitivity training and sitting on boards who helped decide which buses to purchase to accomodate the riders in our area who had various mobility needs. He's aquired several awards over the years, one from Norm Mineta.
One day, he had to go to hospital with one of his respiratory flareups that invariably leads to pneumonia. He goes in to emergency, waits 11 hours, gets put into a room and onto oxygen. He calls me to say he's feeling better. Very early the next morning my girlfriend came banging on my door to tell me he was in ICU. What!? I race down to find him in a coma.
Hubby had been on all sorts of ridiculous drugs for his aches and pains and asthma for a long time. None of which I thought were good for him. The ICU doc was looking at me askance. I couldn't figure out what the problem was. The just said he wasn't going to make it. I cried. I knew my hubby was tired of being sick and disabled but I didn't want to lose him. He looked pitiful.

The doc went away and I asked the nurse what the problem was. She said the word was that hubby had "unknown" drugs in his system. Aha! I thought. They think he is a junky or something. Hubby had a drug problem from 24 YEARS AGO........LONG SINCE OVERCOME. And they know that! He's been in and out of hospital at least once a year for all these years with the same ailment. Assholes. The nurse was nice. I told her he did NOT have any thing in him that wasn't prescribed by a doctor and NOTHING opiate. He was using baclofen, neurontin, elavil, some other neurolyptics, inhalers etc...no opiates. He had PNUEMONIA fercrissakes! I told the nurse that the ONLY other thing in his system that was not on the "list" was that he uses medical Marijuana for his spasms. She was okay with that and began to call the pharmacy. The pharmacy told her to STOP the baclofen and the neurontin immediately. His kidneys had stopped functioning and that was a casual contributor. She stopped immediately.

I noticed on the monitors, with all the tubes going into his body, that one of the things they had pumped into him was FENTYNAL <sp? I asked why, she said so he would be put to sleep so they could insert a tube for breathing.

The long and short of it is, as we worried for days and talked back and forth with the doc is.........they were going to let him die, they were NOT going to be responsible for THEIR mistake in giving him something that caused his coma and renal failure. It wasn't until I had his mother, sister, the whole family, children friends, cameras and gave a "lecture" about HUBBY'S WORTH to us that the mood in ICU changed!! He began to come around, "miraculously" :eyes:

I'm ready to make noise, are you?

http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=104&topic_id=2053945#2056360
This is an old article but the news is still happening....

Subject was on subsidized housing cuts; cuts for every walk of citizen. One poster pointed to an article where a single mother in a wheelchair with two young children were "possibly" about to be put out of an ACCESSIBLE dwelling because of "cuts" to the program.

I can't stand this!! :grr: