No One Way to be Disabled

When Lego unveiled its first disabled mini-figure, I must’ve seen some version of the announcement in my Facebook feed at least a dozen times.

“Well that’s neat,” I thought. It’s so seldom that people with disabilities show up in mainstream culture at all and I know how important it is for children with disabilities in particular to be able to see representations of themselves. This little beanie-wearing fella seemed like a cool kid and one you can imagine all the other Lego figures wanting to hang out with him. Excellent!

But as other sites picked up the announcement and people began sharing it over and over and over again, I started to feel a bit irked by it. There was something about the tone in some of these articles that gave the impression that Lego had now suitably taken care of representing people with disabilities. All of them. Everywhere.

There is a tendency when we talk about representing people with disabilities to think of them as a single group who all have similar needs, similar obstacles and similar backstories. This could not be further from the truth.

Let’s take little Lego man here as an example. As a person in a wheelchair, do you really know his story?

  • Why is he in that wheelchair? Perhaps like me, he was born with his disability and life in a wheelchair is all he’s ever known. On the other hand, perhaps he was in a car accident a few years ago and now he’s just starting to get used to what it’s like to use a wheelchair after being able-bodied up until now. How does this change his outlook on his life and his situation?
  • Does he have barriers in communicating with others? Perhaps he has Cerebral Palsy or some other disability that can impact the clarity of his speech. How does this change how people perceive and interact with him?
  • How independent is he? Perhaps he lives in dorms at the local college and he wheels by himself to and from all his classes. After spending time at the park, he stops off at the grocery store to pick up supplies for tonight’s dinner, which he’ll be whipping up on his own. On the other hand, he could be attending college but also have a full-time aid to help him take care of all his personal needs like dressing, bathing, cooking, getting to the toilet and so on.
  • What does his future look like? Little Lego guy has decided to set his sights on working as a computer programmer in a video game company. Like his co-workers he works long hours late into the night, but fortunately his disability does not impact his physical stamina—or his ability to drink large amounts of coffee. On the other hand, perhaps after he finishes his education he finds he’s struggling with ongoing health issues. He has chronic pain and the medications he has to take make it difficult for him to work for more than a few hours at a stretch. He struggles with the aftermath of trauma and depression and, as much as he might want that steady 9-to-5 job, all the various pieces of his situation make holding down a job like that nearly impossible.

I could probably continue this list indefinitely, but you get the idea. While having a Lego figure that uses a wheelchair is a great step forward in representing diversity to kids, the sheer range of backstories that he is representing is enormous.

Even within our own community, I think people with disabilities sometimes forget how diverse their own experiences are. We try to think and move as if we are a unified group, but can get fouled up in some serious clashes of ideology.

  • My health concerns are consuming my world. I may live below the poverty line, but at least this government check keeps a roof over my head and gives me the personal care assistance I need.
  • I was able to get a job and push forward with my career. I don’t understand why other people with disabilities can’t all be working too.
  • I would give anything to be able to walk again. Getting myself up out of this wheelchair is the ultimate goal.
  • I love my wheelchair! It’s styling and speedy. It gets me where I want to go ten times faster than trying to work my way along on crutches every could.
  • Being disabled isn’t so bad. Stop throwing a pity party!
  • Being disabled makes me so miserable. Don’t tell me it’s all sunshine and roses!

So, let’s say right at the outset, Tilted Windmills isn’t trying to be the voice of “disability” as some kind of singular unit. I can write about my experiences as a person with a disability, but they can only ever be my experiences. I won’t even pretend that I can fully stand in as singularly representative of someone living with Osteogenesis Imperfecta, since OI itself manifests in each person completely differently.

I may also write about how certain things have helped me on my journey so far. I write them in the hope that they might help you—whether you consider yourself ablebodied or disabled—however if they don’t make sense to you or aren’t applicable to your situation, that’s perfectly okay too.

Just as humanity is infinitely diverse, so is disability and there is no one way—right or wrong—to be disabled.

That said, the fact that each of us has our own voice means that all of us have a unique perspective that we can contribute. We have so much that we can teach each other so long as we remain open to our own vast range of experiences.