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Disability Identification

  • Posted on January 9, 2015 at 10:00 AM

I’m reading Nothing About Us Without Us by James I. Charlton. One of the topics he covers is disability identification. As the argument is presented, one of the biggest challenges of the Disability Rights Movement (DRM) is getting people to both identify with their disability and their peers with disabilities and to feel empowered; because, dominant cultures assert that disability is weakness and inferiority.

As the mother of three children with disabilities, it was easy for me to reject the idea that my children were weak and inferior. I value my children as they are for who they are. It was easy to recognize that, yes, they have disabilities, but no, their disabilities don’t mean what the dominant culture says they mean. This is especially easy when confronted with the dominant culture’s willingness to see children like mine as disposable, where parents who murder their kids are the real victims. That makes it really, really easy for me to reject the dominant culture wholeheartedly, because I just can’t find it in my heart to sympathize with parents who kill their own kids, let alone empathize with them.

As a woman with a newly diagnosed disability, it’s a bit harder for me to reject the idea that I am weak and inferior while still acknowledging my disability. Really, the only thing I have going for me in that regard is that I was already primed to reject the dominant culture. When you’ve lost abilities that you once had, it’s hard not to see yourself as “less than” you were. I don’t have the same physical capacity I once had, but since I was never a very “physical” person, I can handle that. But I don’t have the same mental capacity I once had, either, and that’s much harder for me to cope with, because I was and am a very “mental” person.

I think a lot. I think when I work. I think when I “play.” I think instead of getting bored. I am a nearly endless source of my own “amusement.” I hate the fact that I lose track of my own thoughts. I hate the fact that I can’t remember things as readily as I used to. And I hate the fact that fatigue and cloudiness interferes with the way I want to live my life.

I can deal with the pain of fibromyalgia a lot easier than I can deal with the mental impact. There is part of me that sees that impact as making me less than I was. For that part of me, acknowledging my disability is acknowledging that I am less than I was. But there’s another part of me that knows that this struggle misses the point.

When people without disabilities regard people with disabilities as being “less than,” they’re not talking about being less able, they’re talking about being less human. The dominant culture treats people with disabilities as if they were less human, less valuable, less worthy of life, of rights, of support.

I am less able than I was, but I am no less human, no less valuable to my family or my clients, and no less worthy of my life, my rights, and the support of my fellow human beings.

This is simply true.

I could make it a matter of arrogance and point out that I was more able before my disability and that I am still more able than most of humanity with regards to the things that I value. I am still more able to handle three children with autism while respecting them and nurturing them into adulthood. I am still more able to write a damned fine piece, whether it’s a blog post or a web page or a book. I am still more able to create a loving, sustainable marriage with a partner with bi-polar disorder. I am still more able than anyone else to live my life.

That’s true, too; but, it’s not the point.

The point is that people with disabilities should feel free to identify as having a disability without shame and without being made to feel less human. The point is that people with disabilities should not be ashamed to associate and affiliate with other people with disabilities, or even with other people without disabilities. Humanity isn’t measured by degrees of ability. Humanity is an either/or option. Men are human. So are women. But gorillas aren’t. Dogs aren’t. And the fact that I can’t remember the right word(s) to describe the distinction doesn’t really matter either.

We are all human beings, regardless of our abilities and our disabilities, and we all matter.



(This is not to be construed to mean that we should be free to go around killing gorillas and dogs for fun, because they don’t matter. Animals matter, too. So do plants, for that matter. It’s just that, in my opinion, people matter more.)

(Now, I’m going to go ask my husband what the word(s) I can’t remember are, because it’s bugging me that I can’t remember. Apparently the words I couldn’t remember are binary distinction, but Mark doesn’t think it works, because there is more than one type of animal, so it’s not binary. But either/or and yes/no are binary, and that was the point I was making, so I’m going to stick with the thought that refused to be pinned down.)

Special Fathers

  • Posted on June 15, 2012 at 8:00 AM

By the time this posts, it’ll still be a bit early, but not by much, so…

Happy Father’s Day!!!

I’m going to go way out on a limb and say life isn’t fair.  It’s especially unfair to the child with disabilities.  It’s decidedly unfair to the adult with disabilities.  It’s still unfair to the parents of those with disabilities.  And it’s most especially unfair to people like my husband who is both an adult with a disability and a parent of children with disabilities, particularly a stay-at-home dad to children with disabilities.

A while back there was a brief moment of validation.  We were behind on child support—back when we didn’t share joint custody of my step-son—and we were called in to court.  The inevitable question of Mark’s supposed joblessness comes up.  The first time this happened, he was ordered to go out and find work and show proof that he was looking.  This time he explained that he had three children with disabilities and he stayed home to care for them while his wife (that’s me, folks) was self-employed and went to graduate school.  There was a brief pause.  I could see the man behind the table (it wasn’t even a proper judge’s bench, but that’s a whole different matter) visibly take in this information.  “Okay then, you’ll need to make larger payments in order to get caught up.”  And that was that.  It took him a moment, but he got it.  He understood that what Mark is doing is a valuable, worthwhile use of his time even though it doesn’t bring home a paycheck.

So many people just don’t get it and Mark feels guilt over this.  Our church is, um, well neither old-fashioned nor traditional really work, so let’s just say “patriarchal.”  Men are called to support their families and in a traditional family this is wholly reasonable.  But ours is not a traditional family.  Our boys need access to both of us and they need more care than most children their age.  Our church and personal values emphasize family values; for us, that means that nobody can love and support our children the way we can.  Which is not to say that we don’t have some pretty awesome therapists and respite providers who love and support our boys, but they’re not daycare providers and they’re not a replacement for us.  They’re not a replacement for a stay-at-home parent.  (Besides, keeping track of all that is a job in of itself, and one I’m quite content to leave in Mark’s hands.)

So, why does that mean I should work and Mark should stay home (which is work, too, but I’m not going to belabor the point quite yet)?  Two reasons really:  First, I have a calling and a compulsion.  I need to write.  I have important things to write about.  Betwixt the two, my not working is not really an option and my working whilst amongst the noise and activity of our boys isn’t particularly productive.  Second, I can make more money than my husband can, because Mark’s disability cuts him off from many of the employment options available in our area.  Mark’s good at a lot of things, but he can’t drive (which excludes a rather large percentage of the jobs available) and he can’t smile and be friendly to obnoxious people (which excludes customer service jobs, another prevalent line of work in this area) and he can’t work quickly (which excludes most factory positions).  There was little opportunity left to Mark in our area before the economic downturn and now there’s none.

It’s very frustrating for Mark who wants to be able to support his family, who wants to take some of the financial pressures off of me, who wants to live up to the values others foist off on him (intentionally or not) even knowing those values assume a set of conditions that are not evident in our reality.  It’s hard to face this dissonance, to know he needs to be home but to feel as if he should be out working.

Of course, he is working (and here’s where I belabor the point).  Raising children is work.  Raising children with special needs is even more work.  So, to say he’s not working is simply not true.  He is, however, not supporting his family financially.  And that bothers him, though, dissonance aside, it shouldn’t.

So, this Father’s Day weekend I would like to give a special salute to all those fathers who struggle with the pressure to perform in one way when they know they need to perform in another way.  It’s not easy, but what you do is worth it!

Statement of Values: Indiana Workers Recommend Dropping Kids

  • Posted on October 27, 2010 at 9:25 PM

Here’s another distraction from bullying:

Indiana’s budget crunch has become so severe that some state workers have suggested leaving severely disabled people at homeless shelters if they can't be cared for at home, parents and advocates said.

It’s all about the budget crunch.  No, really! 

Oh, wait…

But some families have been on waiting lists for waivers for 10 years. The lists contained more than 20,000 names last month, and one advocacy group predicted they will only grow longer because Gov. Mitch Daniels ordered budget cuts that have eliminated 2,000 waiver slots since July.

(emphasis added)

So, is it just me, or does that imply it’s not about the budget cuts at all?  Sure, the budget cuts are making for a longer waiting list because Governor Mitch Daniels doesn’t care enough to find another solution.  But, really?  Waiting 10 years for services.  And this is just becoming a problem now?  I don’t think so!

Budget cuts also have resulted in the state moving foster children with disabilities to a lower cost program that doesn't provide services for special needs and eliminating a grocery benefit for hundreds of developmentally disabled adults.

See, maybe it’s just me.  But I see this and I don’t start thinking, “Oh, Indiana must be really hard-up for cash!”  No, I start thinking that Indiana’s government doesn’t care about people with disabilities.  That—in Indiana—people with disabilities just aren’t worth spending money on.

Maybe it’s just me.  Or maybe…

Maybe environmentally-friendly roads are more important than people with disabilities.

Or maybe holding onto their cash is more important than people with disabilities.

Maybe the election season is just too damned important to give the people of Indiana the services they need to survive.

Some parents said homeless shelters have also been suggested - or threatened - as an option by private care providers.

Daunna Minnich of Bloomington said Indiana Department of Education funding for residential treatment for her 18-year-old daughter, Sabrina, is due to run out Sunday. She said officials at Damar Services Inc. of Indianapolis told her during a meeting that unless she took Sabrina home with her, the agency would drop the teen off at a homeless shelter.

Sabrina, who’s bipolar and has anxiety attacks, has attempted suicide, run away during home visits and threatened her older sister, Minnich said. Bringing Sabrina home isn’t a viable option, but the two group home placements BDDS offered weren't appropriate, she said.

“I don't want to see the state of Indiana hasten her demise by putting her in a one-size-fits-all solution that will drive her to desperate acts,” Minnich said.

Jim Dalton, Dama’s chief operating officer, said he could not comment directly on any specific case but his nonprofit would never leave a client at a homeless shelter - even though it is caring for some for free after they got too old for school-funded services and haven’t yet been granted Medicaid waivers.

“We’re talking about youth that absolutely require services, and no one is willing to fund them anymore,” Dalton said.

(emphasis added)

Really, this isn’t about money, people.  It’s about value—or the lack of value Indiana officials see in people with disabilities.  It's government-sanctioned abuse.  And it’s got to stop!