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.

The Launch

STEFAN: So this is our “Hello World!” moment here at Tilted Windmills. A good place to start is probably to outline what this site is about and what it means to us. Launching the site has been a long time coming and I’m thrilled that we are finally at a point where we can share our vision with you.

Those of us who are part of minority communities understand first-hand that we live in an unjust world. And yet, we are not helpless. No matter where we are, or what we’ve had to overcome, each of us has the capacity to thrive through the choices we make.

Tilted Windmills is a platform for exploring the ways we learn to adapt, survive and flourish in a sometimes hostile world. It’s also a space where we can showcase our achievements and the beauty we see in ourselves and the world around us.

Who are we? I’ll let my co-founder (and partner) Athena speak for herself. As for me I’m a 30-something year old transman and activist who is committed to doing what I can to expand society’s understanding of gender and disability. My aim is to break down barriers for those of us who don’t fit neatly into the male/female, man/woman binary. I’m also passionate about promoting mental wellness and resilience in the face of social bias.

I have lived the devastating effects of depression, anxiety and trauma that comes with being different. I’ve contemplated my own suicide. I have witnessed the suffering of friends and family members, and faced the loss of financial and mental stability. And through it all, I have learned an important lesson: love makes life worth living. More importantly, love is just the first step…

Tilted Windmills is the brainchild born of a unique partnership. What we offer is a hub of information and advocacy, an engine for collaboration with fellow humans who share our values of kindness and curiosity, and a creative movement devoted to well-being in its various forms.

We hope Tilted Windmills will appeal to those interested in learning more about what it means to live on the edges of mainstream society – the gifts that come with this positioning, as well as the challenges.

Tilted Windmills is a space that celebrates diversity in all of its technicolor glory, and promotes the imagination as a force that enables healing. It’s an experiment in giving voice to our individual truths, to the questions we ask ourselves, the answers we reach for, and the don’t-knows we bump into along the way. It’s a space for self-learning as much as it is a platform for sharing our gifts with the world.

What you’ll find here is a unique perspective on life and living, with a focus on wellness, disability, gender and creativity. I hope you will experience our posts as thought-provoking, inspiring, practical and engaging. Because, ultimately, Tilted Windmills is about wanting to connect with you and collaborate in moulding a different, better world. I hope you’ll leave each post asking: “what if…” with us and daring to complete that sentence.


 

ATHENA: I was born thirty-some-odd years ago with a rare genetic condition known as Osteogenesis Imperfecta, which causes brittle bones, weak muscles and a short stature—as an adult I’m 3’7”. I have lived with disability my entire life and I’ve been using a power wheelchair since the age of six.

When I first conceived of the name of Tilted Windmills—some years before I met Stefan—it was from a place of solitary frustration. As both an artist and a woman with a disability, I felt very much like I was railing at the establishment from the outside edge and that my ambitions were viewed as a little “crazy”.

What? As someone with a disability, I somehow thought I should be able to live independently above the poverty line? Contribute to society at large rather than be seen as simply a burden upon it? Live, love and create passionately and with purpose? Clearly, I had some kind of Don Quixote-complex, so I thought why not simply go with the metaphor.

And then one day I sat down to coffee with a transgender man and started what continues to be a fascinating conversation about what it means to live a life outside the mainstream. Our worlds and our life experiences have been very different, but Stefan and I have discovered a startling amount of common ground in areas such as mental health challenges in the face of adversity, trying to make sense of the barriers and attitudes flung upon us by mainstream society, as well as just trying to understand our own place in the greater picture.

I have come to believe that as human beings we are far, far more diverse and spectacular than we have ever realized. Whether you are ablebodied or disabled, cisgender or living outside the gender binary, you are part of that diverse fabric. In founding and re-envisioning Tilted Windmills with my partner, we hope to clear a space for that extraordinary diversity to be supported, nourished and celebrated, to take this unique conversation that we’ve been having between ourselves and invite you to the table.

This loving, inclusive world we wish to build and live in isn’t simply a fantasy for deluded dreamers. It is a vision that has the power to embrace us all.

Join us.

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