When Diagnosis Isn’t Distinct

Posted: April 24, 2009 in Culture Clash

unity
By Mark E. Smith

If someone with cerebral palsy told you that he wanted to attend a camp for those with muscular dystrophy, then go to the annual Little People Of America convention, then join a multiple sclerosis support group, you’d likely think that he’d lost his mind. After all, why would someone of one disability want to engage in activities exclusive to those who have other disabilities?

Why not, I ask? I mean, sure, I understand that there are intimacies of certain disabilities that are only truly understood among those sharing the precise condition. Yet, in the larger scheme, we’re all living under the umbrella of “disability experience” – so, why should “diagnosis” matter when we define who’s qualified to attend disability-specific events?

Oddly, many with disabilities will tell you that I’m wrong, that there are dramatic differences among those with disabilities solely based on “diagnosis,” where they believe that there are clear distinctions between, say, one with a spinal cord injury and a one with muscular dystrophy. Yet, again, I say not so fast.

The fact is, in the world at large, disability is a universal term that applies to all of us with physically limiting conditions, regardless of literal diagnosis. If you lined me up with a person with muscular dystrophy, one with spinal cord injury, one with dwarfism, and one with multiple sclerosis, and asked an average person from Main Street America what was distinct about our group, he or she would likely note that we each have a disability. And, that’s arguably how we’re seen at large – not remarkably distinct by diagnosis, but simply viewed as physically disabled. In fact, I can’t count how many times a stranger has asked me if I had muscular dystrophy, multiple sclerosis, or any number of disabilities beyond the condition of cerebral palsy that I have. Again, many in the mainstream recognize physical disability, but have no discretion toward specific diagnoses of disabilities – that is, they see little distinction from one “disability” to the next.

Yet, as those with disabilities, we often categorize ourselves as distinct from each other based entirely on diagnosis. We have our own subgroups, and, for the most part, draw social, political, and charitable boundaries around them. Those with spinal cord injury don’t attend little people conventions; those with cerebral palsy don’t attend muscular dystrophy camps; and, the visually impaired don’t attend multiple sclerosis walks. For many of us with disabilities, we hang out with our “own kind,” only support the charity organization for our own diagnosis, and we don’t pay much attention to the progress or research concerning other conditions.

However, from a practical perspective, the fact that we create these boundaries doesn’t make sense. Fractioning ourselves by diagnosis actually diminishes our power to bring change within the mainstream for all with disabilities. For example, it’s fantastic when 10,000 people march on Washington in support of themselves and loved ones with multiple sclerosis, but think of how much more of an impact would be made if people with muscular dystrophy, cerebral palsy, spinal cord injury, visual impairment, dwarfism, and on and on, showed up in support of multiple sclerosis as a cause, too – it would be epic. And, what if all disability causes supported all other disability causes, as well – it would change the social-political climate for those with disabilities in a heartbeat, making us an equivalent force to the AARP, per se.

To use a metaphor, it would be wise for individual farmers in a region to fight to save their individual farms, with each farmer lobbying for his or her own needs. However, if all farmers united as a single body to save farming in the region as a whole, they’d have a lot more socio-political power. Those of with us with disabilities need to see beyond our individual farms, and recognize that the plight of our neighbors is equal to our own, and by joining them, we find strength in numbers.

As one with cerebral palsy, I whole-heartedly support the Muscular Dystrophy Association, and at a recent fund raising ball, I was touched by how many people with disabilities other than muscular dystrophy were both in attendance and donating to the cause, as well. But, one particular gentleman with a spinal cord injury in attendance recognized my cerebral palsy, and questioned me. During the event, they publicly recognized contributors, and he saw that I sponsored a camper to attend MDA Summer Camp. Out of clear curiosity, he asked me why I would sponsor a child with a disability different than my own? My answer seemed common sense to me: “I don’t care about diagnoses; rather, I care about those with disabilities,” I explained to him. “I had a blast at summer camp as a kid, and I trust that the same holds true for kids with disabilities nowadays. So, it’s not a cerebral palsy or muscular dystrophy thing to me. It’s simply a kid thing.”

And, that’s an empowering realization: As those with disabilities, we aren’t ultimately divided as subgroups, but united as one, with remarkably common experience. When we encounter others with disability, we should care less about his or her precise diagnosis, and instead focus on the fact that we’re in this realm called disability together – recognizing a unity between us, where we’re all ultimately of one community, of one common experience. I say, let us possess the presence of mind to support each other as people, not diagnoses.

Comments
  1. m. s. says:

    I cannot believe that within one family we have multiple sclerosis, certebtal palsy, and duchenne muscular distrophy.

    Thanks for the site.

  2. Caren says:

    well said. I totally agree. It is so inspiring to read what you have to say.
    I look forward to your writings every week. you make me think out side the box and inspire me.

  3. fridawrites says:

    Like m.s., we have multiple disabilities in our family, so I guess “interdisciplinarity,” to borrow from academics, is becoming natural for me and I’m definitely seeing the connections among them, even between cognitive disability and physical disability (need for accommodations and 504 plan, legal rights, employment issues, etc.).

  4. annikee says:

    Thank you, thank you. I’ve never understood why people feel free to question one’s disability, nor why there seems no comraderie amongst the disabled.

  5. Tinkerbell says:

    This was a great article. I feel very keenly the separations between diagnoses. As someone undiagnosed, but with problems which share between MS, MD, and SCI, it is hard to find help when I do not fit into one particular group. Great article!

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