I often get exhausted advocating for disability rights and writing about the issues I face in my writing, because the reaction I get often diminishes the reality I and countless others face in the modern world.

When you have a disability, you become very aware that often your power is in the hands of another. Whether in a social or an economic context, our very path to progress is often decided by the signing of a piece of policy or act.

As a result, I have to come to expect this as the status quo: a person with a disability who is trying to gain the same dignities that many of our contemporaries take for granted may often find their efforts interrupted, sometimes permanently.

Although our community will never be given the praise it deserves, many people with disabilities have a keen sense of perception that reaches depths unknown to most. As people who are very much at the mercy of this machine we call modern society, we are better positioned to understand the inner mechanisms and the covert nature of the systems that govern our lives.

When it comes to media coverage or representation, I am more aware than ever that mainstream narratives often push an agenda that does not fully track with the experiences of people within this community. You see, we understand that representation is not one-size-fits-all: for example, while I may write about disability and have Duchenne Muscular Dystrophy, I am not a representative of my community. Nor do I wish to be. I am merely a conduit for my own experience—one which I hope others like me will be able to relate to. There is an entire spectrum of experiences and voices within our community often drowned out by other interfering signals. 

However, the rare times I see representation/coverage, it seems geared less towards representing the experiences of people in our community than towards making able-bodied audiences feel more comfortable and less complicit. 

I understand the appeal of motivational content as well as anyone—in fact, I often long to feel motivated—but I feel really uncomfortable with the fact that the “inspirational” stories are typically all you hear. You hear about the people who rise above difficulty, you hear of the people overcoming adversity, but you never hear about the systemic ableism that created that adversity in the first place. You never hear the voices of the millions screaming out as their governments ignore their degradation.

I don’t want to be some able-bodied person’s inspiration. 

No matter how many people attend these motivational talks or listen to these inspirational stories, they never seem to be the catalyst for widespread change or action. It almost feels like we are still in a Victorian-esque mindset of staring at people with disabilities as if we are novelties. Whether people like to acknowledge it or not, a lot of people have an aversion to disability. They are happy to stare and point, but their empathy and compassion remain a harder nut to crack.

I have been guilty of diluting my words and work. I often present my situation carefully in order to seem like the embodiment of coping, to present the impression that I am flourishing in these often-toxic environments. 

But I am not coping very well. Every day I rise on this planet, I have to justify my mere existence—and, to be honest with you, my mental health is also extremely vulnerable due to the lack of support available to people with disabilities. Lethargy is in my backpack; the weight of a thousand stones keeps me subdued. I wonder to myself: what is the point of my existence if someone else will ultimately decide what mural I will paint?

Why should I say I am suffering if another narrative will replace it with sensationalised propaganda telling you that I should be grateful for any scraps of support I get?

When I write a piece of poetry or writing, for example, 50% of the response is positive and aware of the fact that having a disability is arduous at best. The other 50% includes standbys like “That’s so negative” or “Stop complaining” or “Well, there are many people struggling.”

If you looked at those critical responses in isolation, maybe you could think I was overreacting in some way, but they never exist in isolation. We like to believe that our lexicon is standalone, uninfluenced by ideology, unable to drive action. But these forms of responses follow an ableist’s handbook: if a person with disabilities says something, you shout over them; if someone dares cry, you clap your hands over your ears while you scream.

Many invoke such bland topics as “consciousness” and “spirituality” in order to police how our community should react to disability. These self-professed preachers love to tell people with disabilities how they would manage—without any insight whatsoever into the barriers we come into contact with.  But the reality is that these responses are a case study in projection. These people aren’t criticizing me, not really; rather, they are left in a state of unease at the prospect of looking inwards, because they can tell that they may not like what they see. 

But that refusal to look inwards results in a denial of my humanity. Cutting off the dialogue and discouraging someone who is suffering from speaking in an open space severs them from society. If I am not even allowed the right to feel the spectrum of emotions that so many others do, then society still sees disabilities—however unconsciously—as an abnormality. But here’s the thing: I can be happy, I can be sad, I can be joyous, I can be frustrated—because I am human.

I am not writing this piece to condemn people without disabilities—far from it. I have no desire to decide how someone should feel or act. But the total lack of diversity in representation of people with disabilities is very much an indictment of the times we are living in. I may not be forced to be in an institution, the way I might have been if I’d been alive 100 years ago, but I still feel as if I am in one regularly. 

Sorry to upset anyone, but I am not your inspiration. I am not a puppet who can be manipulated to ease any guilt that some able-bodied people feel.