You are entering the Independence Zone!

Happy October, readers, from my very wet and chilly corner of the world. I’m wearing my emerald green cardigan (favorite color) and armed with a brand new topic, so here we go.

Part of what inspired me to write this blog was a book called Make Them Go Away by a woman named Mary Johnson. Johnson’s book is all about the insidious lack of disability rights–the “case against” even having them–and how ignorance persists even though many people don’t see it. Much of this ignorance comes from the medical model that says disability is akin to a disease, a horrible thing that must be cured or fixed. However, ignorance comes from another source Johnson mentioned, which I believe we need to talk more about.

Johnson explains that disability rights are not often considered a civil rights issue because “we have a time-honored tradition…help the handicapped.” In other words, if ramps and traditional modifications are in place, no matter how inadequate or inappropriate, we shouldn’t be concerned about civil rights. If IEPs are written, ditto, even if they are never enacted. If sheltered workshops exist, what other employment does a person with a severe disability need? If there are merciful, charitable people willing to help, what is the problem?

What a bunch of hooey.

Hear me on this. I am not against traditional methods of help if they are done correctly. When your child with a disability enters school, absolutely he or she should have an IEP if that’s what is going to facilitate the best possible education. If you need a wheelchair ramp, fine, as long as it’s in an appropriate place and actually works. Yet, when it comes to truly helping people with disabilities, I say we’re falling down on the job.

The inspiration for this particular post came from Change.org. I sign some of the petitions that come through this organization. The other day, a petition came through my inbox. It was titled, “Include Liam in First Grade and Treat Him with Dignity.”

Liam is a seven-year-old first-grader who also has Down Syndrome. Liam attends the Mill Valley School District, but he is not educated there. The school system believes it is beneficial for Liam to have a “different curriculum for students ‘like him.'” Liam’s one-on-one aide has testified that Liam has been left standing out in the rain during school because he isn’t welcome in a regular classroom. His school’s administration eventually moved him to a trailer behind the school, where he is “educated” by himself, isolated from peers, using what I suspect is a substandard curriculum. He has already missed a full “normal” year of school.

As my own mother said: if I were Liam’s mother I’d be kicking some tail (and she didn’t say “tail,” which tells you how we both feel about it).

Here’s the thing: who is helping Liam?

I’m sure the system thinks it’s helping when it comes up with solutions like that trailer. I’m sure other people are doing the best they can to help, by circulating petitions and making people aware of the issue. But how much help really exists?

A PWD’s situation doesn’t even have to be abusive for me to ask that question. Think about it. Vocational Rehab services, for instance, were created because a need existed–PWDs needed help finding jobs and acceptance in the workforce. But how many of those programs are understaffed, underfunded, and not appropriate for every client? How many PWDs are being sent to jobs they don’t want, then let go from them six months later, to begin the cycle all over again? What kind of help is that?

What kind of help is it when a gifted student who happens to have muscular dystrophy or spina bifida is allowed to join the Knowledge Bowl team and travel with them–but only given the bare minimum of modifications on trips? What kind of help is it, when the only way that student is allowed to fully participate, is having an aide stuck to him or her like caramel to a filling?

Oh, this one I love. Let’s get down to where I live and where quite a few of you live. What happens when a child with autism is welcomed into a Sunday school class–but the class is not at his or her cognitive level because autism precludes real learning? What about the Sunday school class member with cerebral palsy who is cognitively on par with kids his age, but still struggles with toilet training? Is it “helping” for the teacher to suggest his parents send him to the nursery? (Because really, the FREAKING nursery???) What kind of help is it, when the Christian church reaches out to impoverished people groups in other nations on a regular basis–but they ignore or do the bare minimum for people under their own steeples who need so much more?

Of course, I realize PWDs live in those impoverished nations. In fact, they are probably the most vulnerable citizens of those nations because in their parts of the world, disability laws, IEPs, what have you, do not exist. We need to make the effort to help them. But, as I have always believed, missions of any kind starts down the street. I’m not picking on the church; it’s just a good example. Whether you are part of the Christian church or not, the same principle applies.

“Help” starts with what’s right in front of you. What you see in front of you is a person. They may need a little help or they may need a lot. No matter what though, it’s time for all of us to start rethinking what help means. Modifications, petitions…those are good things. What would happen though, if we went beyond that? If we took a step back from the physical changes we could make and said, “What parts of our attitudes and perceptions need to change?” I think if we started there and worked from the outside in, we would no longer “help the handicapped.” Instead, we would welcome and embrace people we have yet to meet and get to know.

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