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Neurodiversity Movement

The notion of "neurodiversity" (ND) seems deceptively simple: we should accept that brains are "wired" differently and embrace these differences.

Unfortunately, what seems logical and reasonable is far more complex in practice.

I know my mind is different. I have a high IQ, which is a positive difference. I have the "characteristics" of high-functioning autism. I have migraines and was treated for seizures. In other words, I'm certainly an example of neurological difference and diversity. So I am not about to advocate for not tolerating / accepting / embracing the differences my own brain represents.

Of course, "tolerating" implies putting up with an inconvenience. This is what my wife does on the bad days -- tolerates me. Trust me, there are plenty of days when tolerance alone is a big request.

But I cannot, not with any conviction, write that we should not be seeking the causes and treatments for many neurological conditions. I have seen Rett Syndrome and childhood degenerative disorder. Both conditions were horrible. I don't think that any other word can describe these conditions. While Rett can be mild, and some girls "recover" partially with age, the pre-teen I observed affected me emotionally. I realize that is me passing judgment on another's quality of life, but I can appreciate why the parents of such children would want a cure.

I know tests for Down Syndrome have reduced the number of people born with the condition. Isn't that a form of euthanasia? Would it be better to prevent or repair the chromosomal damage? Honestly, these are issues that do trouble me.

If a test for "autistic traits" existed, that would concern me. My differences are valuable. My mind might be different, but those differences give me insights others might not have. Eliminating forms of what we call autism would remove individuals with special insights from our society. I'm convinced there is a reason autistic traits exist.

Yet, I cannot tell a parent that he or she is wrong to want the worst aspects of developmental disorders eliminated. I do understand how horrible it must be to watch a child lose motor control, communication abilities, and so much more. But, then I consider brilliant minds in less than perfect bodies. A body is a shell, a tool for interacting with the world. It doesn't have to be perfect.

I wish I could embrace the ND movement completely, but somehow it seems too simplistic at times.

I'd change some aspects of my mind and body if I didn't have to sacrifice my unique abilities. That doesn't mean I suffer self-loathing, as some ND "radicals" have suggested. No, I simply do not see positives to migraines and seizures. What's wrong with wanting to know how and why these conditions exist? What's wrong with not wanting seizures?

This is a tough issue for me. There are no easy answers, but it's hard to see the positives to some conditions.

The most radical of the ND movement do not want any research into causations, treatments, or cures for various neurological conditions. They want to avoid any potential for euthanasia or genetic therapies that might eliminate differences. They seem to celebrate autism spectrum disorders. I'm not sure I'd celebrate autism -- as I've written before. I accept that I'm different, but I don't take pride in it or want to celebrate it. I'm simply different. Everyone is. I wouldn't mind knowing what makes me the way I am.

Neurologists are always going to search for clues to brain development. That's what they do. Should we stop science because of what it might discover? Should all funding be shifted to other projects, away from science? Sorry, but I definitely don't want that outcome.

I'm all for funding science. The more, the better. It's what we do with what we learn that I worry about.

What I want to see happen is more individuals with neurological differences included on advisory boards, institutional review boards, and research committees. Those of us who are different must be included in the research planning and implementation. I think the ND movement is a reaction to not being heard. With a voice, a "seat at the table," maybe the tensions between parent-advocates and self-advocates would abate. Such tensions will always exist, but reducing them would be a nice change.

Comments

  1. I feel the same way as you. I feel like I'm waffling but I'm not. I want my son to be accepted, but my friend's daughter who has so many problems--I want her accepted but she really needs so much help. A cure would be wonderful. But the same cure would take away...as you have already noted.

    ReplyDelete
  2. It is difficult when I see a child with severe issues. How can I tell a parent that the disability is a "gift" in any way?

    My challenges are not gifts, but I also have "gifts" within those challenges. It is complex.

    ReplyDelete

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