are we not worthy?

How unfortunate.
Seeing people “worse off” reminds me how small my struggles are in the scheme of things.
(Thank you, dear Lord.)
But I don’t get it… if she needs help in the bathroom,
She should stay home
They have internet programs now, and books,
Why does she even come?
She’s a detriment to others.
What selfish parents.
Our children shouldn’t have to sit next to her.
This is sickening.
A tube! I don’t want my kids to watch her eat!
If a machine has to breathe life into her lungs,
Is she really worthy of this air?
What if she DIES in the classroom?
I don’t want my kids to watch someone die!
Why are her parents sending her to school?
Anyways, if I was them, I’d want to be with my daughter in her final days…

These are all comments made by people on a Chicago Tribune story that FRIDA recently posted about a young school girl in Illinois who wears a big yellow Do Not Resuscitate* sign on her wheelchair.

The article is a hard read, largely because it’s written with the assumption that if you have CP (cerebral palsy) you’re going to pass any second. Also, I have a very difficult time with these “right-to-die” stories because although I believe in personal liberties, these particular cases are based on the idea that life with a ventilator or any assistive technology is absolutely horrific. They’d rather be dead than be me. The ironic-but-sad thing is that ventilators, powerchairs, sign language, learning braille, crutches, feedings tubes—for the most part, they make life BETTER for people. Life happens to be of higher quality, you know, when you can actually do things like breathe. Ventilators tend to help  with that.

However, what was “harder” about the story were the comments that followed afterwards. (The statements above.) It seems like although there have been many changes for disabled people (like the fact that we can go to school), these things are reminders that disgust for disabled people is still prevelant.

Yesterday, Dread made a very great point about the ransom notes campaign and I think it applies here:

This “campaign” is proof positive that there are folks out there who are just plain diabolical! I refuse to believe that they just “don’t get it”, not with all of the disability activists out there with whom they could have consulted for the real picture. It’s as if they’re on a mission to stigmatize, demonize, and marginalize us.

Instead of taking a systemic or wholesome approach at studying ableism, we often pin the oppression we face as disabled people as “misunderstanding” and a need for awareness, I would say moreso than other movements. Now this may be largely because much of the movement is still run by nondisabled people, it is convienient for the people in charge to have us think awareness only, or perhaps the fact that we are taught to want to be “just like everyone else” and don’t want to believe people can hate us. “They wouldn’t bully Johnny if they knew about his disability.” Hey, we should teach them about Johnny! Well what about looking at the systems that makes disability=dependence on others=burden? What about looking how our ableism, like racism, is enfused into everything that we learn? Isn’t making it an individual issue a good way to avoid creating radical and revolutionary change?

Chip Smith, author of the Cost of Privilege says it well in a comment on an earlier post:

The thing is, even if a white (heterosexual, abled, male,…) person is personally pretty decent, that person still retains the advantages that go with being privileged in U.S. society. It’s built in. So how do we move from personal awareness to also fundamentally reshaping our social system? For me, one person at a time — though necessary — doesn’t get it done.

If it isn’t apparent to you yet with 2007 cases like Christe Reimer, Ruben Navarro, Katie Thorpe, Ashley X, (I’m too tired to link but go over to FRIDA’s website, Not Dead Yet’s, or Cilla’s), the truth is there are people that actually hate disabled people. Sorry to break the news but they literally want us gone. Dead. Locked in basements. Starved. Suffocated. Drowned. Overly medicated. Prettying it up by saying we just need them to understand us better, quoting Dr. King over and over, and settling for what table scraps we’re given is not going to cut it. Awareness without systemic change never will never work and our people our suffering because of it.

We have to RISE up. We have to take control of our movement and the direction it’s headed (let’s start by putting the focus on COMMUNITY and not promotion of the individual.) We have to make it our responsibility to tell our OWN people that to be a part of this community is a blessing, not a curse. We have to take power. There aren’t any options left.

*DNR means that you are legally saying that you do not want life-saving help in an emergency.


Filed under ableism, community

32 responses to “are we not worthy?

  1. The more educated on the medical model of mental illness people are, the more social distance they want to maintain between themselves and people with mental illness. “Education” makes things worse for people with psychiatric labels, but that’s all we hear from non-disabled folks who lead mental health advocacy groups, we need more education. No, apparently we need less education, they like us better when they think something bad happened to us as a kid or that we have a weak character.

  2. pennylrichards

    The “What if she dies in the classroom?” one got me. My son had a big ugly seizure at school a few years ago–the ambulance, the paramedics, the stretcher, the sirens, the whole school knew a kid from his class had gone to the hospital.

    He was back within the week. In his bag the next day was a packet of get-well cards made by the second graders. Many of them drew Jake, so I got a sense of how they saw him, smiling, his chair, his blond hair…sweet, really. But I also got the sense from their notes that some of them weren’t sure he’d ever be back. Like an ambulance is just very very bad news, instead of the fastest practical way to get to the hospital when you need to. By knowing Jake and seeing him come back, those kids learned that there’s a lot of ground between the ordinary day and the last day of your life.

    So, to change the question a bit, “what if he seizes in the classroom?” Well, it happens, and it’s scary sometimes, but life still goes on. I think that’s a pretty valuable thing to learn.

  3. pennylrichards

    I should add that I certainly don’t think it’s Jake’s purpose in life to teach kids this stuff. Just in case that wasn’t clear. It’s just an example of how “What if…” questions are usually more panicky than their realistic answers warrant.

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  5. Aaminah

    “Also, I have a very difficult time with these ‘right-to-die’ stories because although I believe in personal liberties, these particular cases are based on the idea that life with a ventilator or any assistive technology is absolutely horrific. They’d rather be dead than be me.”

    What bothers me is that these types of stories AREN’T usually about personal freedom of choice at all. They are rarely the person themselves saying “I’ve been living this way and I’m tired, I don’t want to do it anymore” (and even when they are, don’t we all feel that way sometimes and have the right to express it without it meaning that we actually will do something to kill ourselves and are begging for help to do it?). More often, far more often, it is parents or other caregivers, and strangers like the commentors to the story, who make the decision that the life quality is so low the person should be “allowed” to die. What about asking the girl with the DNR? Just because she has a DNR doesn’t mean she wants to die right now and has no right to living as best as she can in this moment.

  6. I really think the whole idea that ableism, racism (any other -ism) will be magically cured if we just educate more is one of the greatest liberal myths. And it’s crap. Hasn’t worked. Isn’t going to work tomorrow or the next day. It’s time for a change in approach.

    And I like your idea of focusing on community, not just individual change. Personally, I have spent a lot of time on addressing my own biases and prejudice and I have this very idealistic wish that everyone would do the same. But yeah, NOT ENOUGH TIME. Plus, a lot of people don’t even realize they need to change, so how are we going to expect them to individually change their outlook. Organizing around community principles sounds like it could bring more comprehensive change. Then perhaps people like those parents – with those dreadful, hideous comments (really, I wanted to just scream at them) – will have to face up to the reality that they bear responsibility for ableism, that *they* are the people with the problem.

  7. in times like these, it’s refreshing to see allies who get it. seriously folks.

  8. Think_Freestyle

    So how do we really move from this awareness campaign to building community and looking at ableism, etc? It would be cool to make some kind of tip list to post – it could even just be a list of ideas…hmmm. we’ll have to think on this. any other thoughts?

  9. You beat me to blogging on this one. I read about it a week or so ago, planned to post but had a load of other shit to do, and frankly also wasn’t sure if i was up to dealing with the inevitable “you just don’t get it” responses, particularly after some incredibly patronising replies to the person who posted about it on the autism forum where i saw it.

    Good to see that there are other disability bloggers posting about it… i probably will post about it in the next couple of days…

  10. That yellow sign is terrible! It is really funny bout how people worry about your mortality and then want to end your life as well.

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  12. Brilliant post. Sometimes the ignorance of people truly astounds me.

  13. Great story, I did admit that I laughed out loud at this point, “They’d rather be dead than be me.”

    You mean you HAVEN’T been told that by:

    A case worker?
    A case manager
    a care worker?
    a person in a disability funding office?
    The person driving the Handidart bus?
    Taxi drivers?
    The person checking out your library books?
    etc, etc, etc…

  14. Reading the article, do they give Katie a voice at all? The way it reads is that Katie had a scary episode where it looked like she might die, the parents didn’t want to deal with the chaos of her being sent off to a hospital instead of being with them when she dies, so they decided to get the DNR order.

    “Beth Jones says she has prepared herself for her daughter’s death.”

    What about Katie? Is Katie prepared for her own death?

  15. Bq

    Those comments are completely disgusting.

    About the commenter who said this:

    “She should stay home
    They have internet programs now, and books,
    Why does she even come?”

    It’s amazing. People should hide away based on *your* superficiality?

  16. Bq

    UGH!! It takes some gall to anoint oneself as the arbiter of whether someone is “worthy” of breathing air.

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  18. They will never admit it is a matter of HATE… they will always convert it to socially-acceptable sympathy, paternalism or some other kind of arrogant condescension.

    But of course, it is hate.

  19. And you know, I nearly “saw someone die” in my class, too, from a football injury. (We didn’t know if he was dead or not, but we thought he could be, and it certainly looked that way.)

    At the least, he never played again.

    But that’s able-bodied sports, so that’s somehow different, huh? Football and swimming have a high number of injuries, but we don’t see anyone saying “They could die!” I’d like to see the stats on which kids die more often in school activities, disabled kids accustomed to looking after their health or able-bodied athletes and daredevils? I think we all know the answer to that one.

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  22. I just read all the comments on the article and now I just feel sad and disillusioned again.

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  25. Sorry about missing this, Crip Chick. I hadn’t been watching blogs much these past few weeks due to, well, stuff. This hits one of my hot buttons, too – the idea that not being perfectly able-bodied makes people disposable. Or, really, the whole “right to die” thing, which seems just plain horrible.

    I just can’t imagine labeling a child as disposable like that, for all to see. I mean, seriously, what are they thinking? I mean, other than thinking that medical technology to make life easier for Katie is a bad thing… 😦

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  28. Just wanted to drop by and thank you, Crip Chick, for being one of the very first to really write on this and kick me in the pants about it.

    And also for nailing, specifically, the vent-phobia, which I suspect lies at the heart of the parents’ decisions. I suspect, with the limited info the article gives, that it is not that Katie cannot be saved and even live well. It is that they have chosen this instead.

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  30. “What about asking the girl with the DNR? Just because she has a DNR doesn’t mean she wants to die right now and has no right to living as best as she can in this moment.”

    For that matter, did they ask her before putting the DNR order in place?

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