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Archive for August, 2014

Blurred Lines–And No, I Don’t Mean the Song

Hello, readers,

Clean lines make everything so much easier, don’t they? Red lights mean “stop.” Green ones mean “go.” Two and two will always equal four. Mixing red and blue paint will give you purple paint (although if you’ve ever been to certain Christian youth camps, you also know “purple” can be a tricky subject).

Certainty is appreciated. Definite answers make us feel safe and secure. The problem is, once you get past about age six, the lines you knew start getting blurry. Mom and Dad might accelerate instead of slowing down at a yellow traffic light. Mixing that purple paint with yellow just to see what will happen will likely result in muddy brown paint. And for some, the lines are even blurrier. Yeah, you know what I’m getting at. When you have a disability, it’s difficult to define lines of any kind.

I got the idea for this post after a frequent reader commented on the last one. She wanted to know what would happen if Cedric, the adult in my fictitious example, actually refused to shower and would not do it without goals set by someone who supervised him. As much as I hated to admit it, she had a point. Some people, disability or not, will not do what must be done to care for themselves without outside intervention. Some disabilities may be so severe that outside intervention is needed to complete physical tasks even if, without the disability, that person would gladly care for him or herself.

The question is, does this clear up anything? I’m not sure. In fact, some of the research I’ve done since last week makes me think that I’ll never figure this disability/equality thing out. Here are a few examples of blurred line issues:

  • I frequently read Parents magazine (just for the articles). 😉 One of its frequent contributors is a mom whose son Max has cerebral palsy. She writes a blog entitled To the Max about the joys and challenges of raising her son, just like any other mom might. But in a recent post, she also explains that Max has learned to do so many things because she “trained” him. “I put him in his gait walker…I strap his feet in night braces…I held the spoon until he could feed himself,” she says (paraphrase). My gut reaction was to flinch for Max. I got “strapped into” night braces as a kid and hated them, but was made to wear them even after I expressed this over and over. I was taken to “gait labs” at a local Shriner’s hospital to have my walking evaluated. I hated missing school and being keyed up all day, wondering if those doctors would recommend surgery.

But here’s where the line gets blurry. Sure, I don’t know if Max wanted all these things done to and for him. But would he be as independent now otherwise? Would he be in pain otherwise? I simply don’t know.

  • I read that recently, Pennsylvania placed a law on the books stating that parents who receive a Down Syndrome diagnosis for an unborn child must be “given all the information possible.” Many advocates protested because “all the information” included abortion options. Others have since raised the question, if we allow laws like this about Down Syndrome, which condition will be next? Will Down Syndrome eventually disappear?

Again, my initial reaction was to side with the advocates. I am pro-life, even and especially for babies with disabilities. This is partly because of faith-based conviction, but even if I didn’t have that, I’d be concerned about whether we’re headed down a eugenics road as a country. But again, the line is blurry. If I were to have a baby with Down Syndrome, I would want all the support I could get. Just because a pamphlet included abortion information, I wouldn’t terminate my pregnancy. That would still be my choice. So should I judge Pennsylvania, Maryland, and other states for having these laws?

Increasingly, I find in the world of disabilities there are no easy answers. But here’s what I keep coming back to:

  • All life has value, even lives touched by disability
  • All people deserve good quality of life
  • People with disabilities deserve to be listened to and treated with respect

So maybe you’re like me and don’t know the “right” answer every time. Maybe you’re a parent whose child has a disability and you’re wondering, “To whose benefit do I send my child to constant therapy sessions and make them wear braces that hurt?” Maybe you work in the disability community and are saying, “Babies with disabilities shouldn’t be terminated, but those babies grow up to be bullied and misunderstood because there’s a lack of information. What can I do?”

The best advice I can offer is to remember the three things above. Trust your instincts. As other advocates have said, if you wouldn’t do X to a person without a disability, don’t do it to someone who has one. In other words, for example, group home staff or school aides can be helpful. But if you wouldn’t want them hanging over your shoulder–that’s right, don’t do it to the people who are utilizing their help. And when the line starts to blur?

Well then, disability aside, you look at the individual and the situation. And then you decide, “Morally, ethically, where is the BEST line for this person?”

The Trust Factor: Where’s the Trust for People with Disabilities?

Hello, readers,

I recently started a challenging, demanding, and great new job. I work for an online writing company. Being online has several advantages over the traditional 9-5 office job. For one thing, I don’t usually do it but could work in my nightgown and slippers if I chose. I’m doing what I love–writing. And I get to set my own hours.

However, working online takes a lot of discipline. My supervisors don’t track whether I’m working or not; they have to trust that I’m on the clock when I say I’m going to be. They have to trust that I will meet my deadlines, and they have to trust that I’ll read, understand, and respond to client specifications.

Did anybody notice a common thread there?

Yes–my employers and I have to work on a foundation of trust because we’re not face-to-face. But even if we were, we’d still be operating on that foundation, right? Right.

I find it interesting that as a person with a disability, I work in a field that utilizes trust so much. I also find it interesting that my family has trusted me to be home alone 6-8 hours on weekdays (it has its ups and downs) while they work at traditional jobs. Why do I find this so interesting? Well, it’s because some people would say, “Of course you’re trusted because your disability is so mild.” Or, “You’re trusted because your disability is only physical.”

And of course I say–what is up with that?

What do I mean? Well, sad as it is, I don’t think many people with disabilities are trusted in any sense of the word. For example, a child with autism who functions well in his social group is nonetheless placed on a “behavior plan.” His teachers and even parents explain this is because of IEP requirements, federal law, and so forth. And that may be. But too often, the teachers and administrators at school have a negative knee-jerk reaction the second the child seems to “disobey” the behavior plan. Why? Because the child is not trusted to act appropriately.

How about another example? We’ll give the example a name this time. Cedric is an adult with a disability in his 20s-30s. Maybe even 40s. His disability is intellectual as well as physical. He has been placed in a group home (more on “placements” in a future post). He has also been given an IHP that states he must shower and dress within 30 minutes of waking up.

The stated reasons for this? “We have to use these plans to comply with community/state standards.” “Cedric needs to build his independent living skills.” Or even–and boy do I hate this one–“Cedric would never shower if we didn’t have it in a plan.” (Seriously, people? SERIOUSLY)?

But I’ll tell you the real reason for that goal: Cedric is not trusted. He’s not trusted to take care of himself, know his own needs, and set his own schedule.

Or how about this one? Yasmine is a college student. She has a physical disability. Maybe she uses a wheelchair, is blind, has a prosthetic–it could be anything. Anyway, Yasmine is pretty much allowed to do her own thing–except that the college’s disability services have forbidden her to use the dorm’s kitchen. No questions, no examinations, just flat-out forbidden it. Why? Because she might hurt herself. They don’t trust her. They may have “proof” of this, like parental testimonies or an old evaluation from high school, but a lack of trust exists.

Now, am I saying PWDs should be placed in danger just to prove trust? No. If there are real risks, they need to be addressed for everybody’s safety. And there’s nothing wrong with goals, either. But risks need to be assessed fairly, and goals need to be relevant and meaningful. PWDs need real say in what they do with their hours, their days, their lives.

We think that PWDs will be “independent” when they learn to bathe, tie their shoes, cook a meal, make a bed, take a bus. But should that be our standard? I mean, how would you feel if no one trusted you to do those things? To hold down a real job? To be honest with and respectful toward others?

Where’s the trust, people? How about we all work on finding it? And then we can worry about how to cook a meal and take a bus.