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). πŸ˜‰ 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?”

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6 thoughts on “Blurred Lines–And No, I Don’t Mean the Song

  1. Hi! I’m glad I gave you somethings to write about. I absolutely agree with you here and I’m glad that you can provide some much more valid insight than anything I can obtain on my own as a (currently) able-bodied person. I have often struggled and wondered how to deal with these blurry lines in many situations.

    In my previous town, there was a well-publicized case of a woman with down syndrome who wanted to choose her own living situation but, because of some accidents and incidents, was deemed unfit to care for herself. Because of this, she was removed from the home of her friends where she had chosen to live and placed into a group home against her will by her family. She was fighting in the courts, along with the friends that had previously been housing her, to have the right to decide her own living situation. I 100% sided with her, but I also understood the difficult situation. At what point do people step in and protect those who are less able to protect themselves, and at what point do we allow autonomy? Also, what role do our biases play in this? For example, one of the incidents that caused her caretakers to claim she was unfit to care for herself was that she had recently been in two different bicycle accidents. Thus, it was assumed that she was unable to safely transport herself. But if a neurotypical person had gotten into a couple of bicycle accidents, would we consider them inept or just unlucky? Would we even dream of telling them that they are not allowed to make their own living choices because of a couple of mistakes or unfortunate accidents?

    Happily, the court eventually sided with her in the end, although in a limited ruling that indicated that she would need to show progress towards living more independently and safely in order to maintain her living choices. I would like to think of that as a happy ending, but I also think it’s sad that a person’s autonomy is held hostage by people who need them to “prove” they are independent enough… especially given the biases that people are prone to. Can a PWD ever be confident that they can prove to someone without that experience that they are “good enough”?

    On the other hand, if this woman was indeed unable to protect herself and had ended up dying in an accident, would her caretakers have been negligent to have let her make those choices?

    I also remember spending lots of time as a child at a daycare for mentally disabled adults. I enjoyed hanging out with them and playing games with them, particularly one man named Paul who was very friendly to me. He was a very exuberant person who lived to give hugs and acted very impulsively at times. Since he didn’t always know his own strength, this could be a hassle for others, although I never minded. I think he may have hurt someone by accident, although I am not certain. But, shortly before I left, someone apparently decided that he was too much of a danger and put him on some sort of medication to calm him. He suddenly had less smiles and didn’t hug and seemed to be confused or bored. I felt really sad for him because I felt that, if he had had the choice, maybe he would not have chosen to take that medication (I don’t actually know for sure if he agreed to it or not). But at the same time, I am certain other people were just trying to do what was best by preventing him from accidentally hurting the other residents. I didn’t feel it was right, but I can understand the dilemma. Again, I feel that our biases play a huge role in this; people accidentally hurt other people all the time, but we generally don’t assume that the only solution is to force them on medication!

    I think, above all, it’s important to keep in mind the points you listed above: all people have value, all people deserve a good quality of life, and people with disabilities should be respected and listened to. Those three guidelines won’t prevent blurred lines from happening, but it will at least give us a good moral framework from which to address them. I also think it is absolutely imperative that the voices of people with disabilities become more prominent to help erase some of the stigmas and biases. It’s harder to dehumanize someone that you know than someone that you don’t.

    On a completely side note, I’ve actually started a transition from my female body to being male. I, of course, don’t expect you to have known this, so there’s no hard feelings. But I’d love it if you could change your pronoun for me from “she” to “he”. It would just make me feel more comfortable. Thanks! πŸ™‚

    Geez, I suck at writing short comments. πŸ˜›

  2. That’s okay; I suck at short blog posts. πŸ™‚
    The truth is, the dilemma breaks my heart. It also makes me angry because I end up siding with the PWD involved in these situations, and people around me go, “But they can’t,” “But they won’t,” and on and on. Good grief, even my own mother does that. I love her to death, but we disagree on what is “right” for PWDs with moderate or severe disabilities. Because of the degree of mine, my family and I were spared a lot of the painful choices you talk about. But that also means we all, myself included, have underestimated more severely affected people.

    I think the best point you made was, again: would you do this to a person without a disability? For example, if I had a college-aged daughter who was temporarily able-bodied and had moved into an apartment with her friends, would I remove her and make her come home because she got in a bike accident? No way! Bicycle accidents are part of life. And to take it even further–if one of those accidents also caused someone else to be hurt through no fault of her own, would she be hauled to court? Would she be told she must live in a supervised home until she made sufficient progress toward caring for herself as determined by the court? No. Again, I understand the dilemma, but I think we have substituted “that’s part of life” with “PWDs are not allowed to experience life. It is too dangerous, so they must be supervised. If they don’t want supervision, it will be forced upon them.”

    I feel so bad for this woman and for Paul, who became bored and sad after being placed on meds–for hugging someone. I have to wonder: do people like Paul look at the able-bodied population and say, “What did I do? Why am I being punished?” And then, because they see our “caring reactions” as a punishment, they withdraw from life or refuse to meet goals or whatever. But then what happens? They get labeled as depressed and noncompliant. Damned if you do, damned if you don’t! (Pardon the French). It is no WONDER PWDs have so many struggles.

    1. Yes, exactly. “PWD’s are not allowed to experience life” seems to sum up a lot of peoples’ ideas. I don’t think they are intending harm, but they view disabled people as children, and sometimes give them even less freedoms than children. I think this is a dangerous way to view it. Some disabled people may have a limited understanding of the world, but they are still adults and want to live full, open lives. Sure, some of them may need specialized care in order to protect them or help them navigate parts of life, but as much as possible, that should not interfere with their autonomy or personal choices and freedoms. I think if we viewed PWDs as competent until proven otherwise (like we do for the able-bodied) instead of viewing them as incompetent until proved otherwise, that might go a long ways in making this better.

    1. Will do! I’m gonna bookmark that so I can read through it once I have more time.

      Sorry, don’t mean to bug, but would you mind changing the pronoun for me in your blog post from “she” to “he”? It would just mean a lot to me.

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