I feel conflicted being referred to as “inspiring” as a disabled activist.

Nicole G. Cowie
Nov 4 · 5 min read
Image courtesy: https://affecttheverb.com/disabledandhere/

During the course of my mental health/disability activism, I do outreach events and give speeches. Invariably, in the course of doing my work, I am either introduced as “inspiring” or told I am “an inspiration” by average everyday folk. I understand that they mean well, but I still get a pit in my stomach when I hear it. But why?

It would seem like a positive thing, right? Well let’s scratch below the surface. Many times, the person that refers to me as “inspiring” has never met a person who is publicly open about having a mental illness and living with it. That person may come with the usual stereotype of the “mad, violent, out of control” person in their heads and then they meet me -a seemingly “sane” person talking about mental illness. Perhaps they don’t expect persons with a mental illness to be functional, to have a job, a degree, a significant other — hell, a life and yet here I am. It blows their minds and they can only respond that I am “inspiring”. I get it.

When I was first diagnosed back in early 2001, there was only one person like me in Trinidad and Tobago’s public eye doing mental health advocacy work while living openly with a mental illness, Caroline C. Ravello. Up until I encountered Caroline, I thought functional people with mental illness existed only in foreign movies. I was inspired by her. I wanted to be like her when I grew up and eventually I started doing public mental health advocacy myself So I understand the dynamic of being inspired by someone like that.

And that is the point! I was inspired by Caroline, because I did not see role models like myself living functional lives while having a mental illness in the media and in real life. I only saw them, maybe, in foreign books and magazines. I decided to make that a core part of my activism : to the tell the story that yes, you can have a life after being diagnosed, that is actually more normal and more people with mental illness live a functional life than you think.

However, as I continued my life after my diagnosis at 21 and achieve fairly normal life milestones — getting my degree, getting a job and working, getting married, I began to realize that I and others suffered from a particularly insidious kind of prejudice — the “soft bigotry of low expectations” I initially bought into the media and personal narratives of personal with mental illness could not be functional and achieve basic average life milestones and so do many people. That is a really low expectation for ANY human being.

This “soft bigotry of low expectations” has really begun to chafe and burn. I have ended relationships because of it. One frenemy thought that I should just put money into the national retirement insurance scheme and wait around to retire after I had a major career setback because I couldn’t possibly recover and do something else. I ended another relationship because that person thought the bar was set too high for me to ask my significant other for a certain level of support during a rough patch with my mental health. (Apparently, the vows “in sickness and in health” are null and void when you have a mental illness). And so when someone says that, I am “inspiring”, I cannot help but wonder if it is because they found me inspiring as a human being or inspiring because they never though that I as a person with a mental illness or disability could do average, everyday things.

That “inspiring” box can be a prison for me. I remember referring to something I did or said as being “bitchy” to someone who is well known on the public speaking circuit. The person cautioned me to watch my language because I am “branding myself as inspirational.” Well, I replied to that right quick. I told the person “Being inspirational ain’t my job.” And it really isn’t.

My job is to advocate for mental health and disability issues. I don’t only live with mental illness as my disability but my involvement in disability and mental health affairs is by profession. My degree has a research and social policy underpinning and I chose to do the majority of my undergrad courses in and around notions of disability. To my dismay, I was told about being “humble” by the well known public speaker after I told her that being inspirational wasn’t my job. Needless to say, I am not really much in contact with that person.

I also feel that media plays a huge part in putting me and others like me in the “inspiration” box. The narrative is always that persons with disabilities are achieving and living “despite” their disability. Just. NO. I don’t live despite my disability, I live WITH my disability. Yesterday was a perfect example. Chronic insomnia is one of the hallmark symptoms mental illness. I had a bad night the night before but I had a full plate of meetings the next day. I got some vitamins to boost my energy levels to a tolerable amount and I went to the meetings. I wasn’t 100% all the time but this is my life. My disability and the effects of it are something to live with and sometimes manage so I could function in the rest of my life as a friend, lover, activist, researcher, writer, entrepreneur and the list goes on.

I have lots of disabled friends who are doctors, lawyers, cashiers, grocery attendants, moms and dads, aunties, caregivers, daughters and sons, husbands, wives, partners. They all live WITH their disability so that they can be the best they can for themselves and those who they love. It is your “soft bigotry of low expectations” that sees them as inspiring for doing normal life activities DESPITE having a disability when in fact, they are just living their everyday lives.

Are they living a life with barriers while facing prejudice and discrimination? Yes. At the end of the day though, they are just living life with all its triumphs and tragedies, joys and sorrows, ups and downs. Media in Trinidad and Tobago, I am looking at you to give a much more nuanced coverage of persons with disabilities than the same old trope of the “inspiring supercrip”

So, I want you to think a little critically the next time you find a disabled person’s story inspiring. Am I really being inspired by that person because they actually a great human being or did something notable? Or am I being inspired by disabled people doing normal life stuff because I did not think they could do that? If it is the latter, then someone doing normal life stuff, disabled or no, may not be so inspiring after all.

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