The Dark Side of Disability Pride

The Dark Side of Disability Pride

written by Heather Leigh Cameron

It's Disability Pride Month and I admit, I don't have as much pride in myself the way I am because my negative experiences and the negative interactions I've had with others over my disabilities have made me regret being me more often than not.

I've been thinking about something a lot lately: that there is a severe lack of respect towards people with developmental disabilities who want to involve themselves in communities of any kind. I am saying this as both as an artist and a a member of the Church of Jesus Christ of Latter-Day Saints, an actor and a writer with ADHD/Non-Verbal Learning Disorder, which is on the autism spectrum who was only properly diagnosed in 2008, and someone who has faced 'the ugly side of community' and life in general more than I have faced positive things.

I've struggled very hard to develop myself as a person and within my careers over many years and a barrier to me gaining or keeping opportunities in my fields seems to be, more often than not, centered around the fact that people aren't comfortable around me and my 'quirky' self. I'm not a harmful being, nor do I strive to bring harm to anyone. I'm just a quirky, kind individual who wants to be involved in art, as it is a passion of mine and I have a lot of heart and have worked hard to gain skills that I can't seem to be able to use because people's fear seem to overrule their faith in my ability to do good for them.

Why am I suddenly talking about this so openly?

I recently auditioned for a play that is going to be put on by a theatre company in the area. I gave my heart to the audition, I made them laugh in the audition, and I was told that I did really well and I was made to feel like the group was going to make space for me.

Several days later, however, I got an email informing me that I wasn't getting a role and that one of the factors behind the decision was "how each performer fits in the overall cast." I admit that I was rightfully confused by this, as I wasn't entirely sure how 'fitting in' had anything to do with the kind of performance I put forward for my audition. I did ask for clarification and did mention that I'm neurodivergent (ADHD/Non-Verbal Learning Disorder, which is on the autism spectrum), so I'm not entirely sure what 'how the performer fits into the overall cast' has to do with casting. I also mentioned their positive feedback during my audition and the impression they left me with. I even asked if there were concerns regarding my ability to function appropriately within the environment of the show given that I mentioned my disabilities on my resumes.

I was told this "I want to assure you it has absolutely nothing to do with a performer's disabilities or diagnoses. The wording 'how the performer fits into the overall cast?' refers to the process of casting a show, in which a director must also think about the characters' relationships with other characters, ensuring parent/child age ranges are believable, etc."

I was under the impression that rehearsals were the opportunity for believable relationships to be developed between actors and characters. I was told my name would be passed along to the head person so I could 'act as crew.' I didn't really feel satisfied with this answer. It reminds me of experiences I've had in the past where I was told I was awesome only to find that 'external circumstances' led to me being seen as anything but.

I truly thought actors rehearsed so they could learn to fit into their roles and the overall ensemble? I didn't think actors could be held back from opportunities because they didn't 'fit in.'

I guess I learn new things every day including that people can make rushed judgments about one another without really getting to know them and what they are capable of. They can't seem to look past a single word. They give one word too much power over judgment and the ability to love that I believe we are all born with. People let their fear of what they don't understand overrule their faith in other people, their talent, and their potential.

I've been thinking about 'not fitting in' a lot and it's just felt wrong to me.

It's also made me think back to how me not 'fitting in' has led to me being excluded from arts opportunities or minimized simply because I don't 'fit in' and nobody seems to want to help me to fit into spaces because it's 'uncomfortable' for them.

Over the years, I've emailed various arts companies in the area before when I see 'calls for crew' for productions and I've either been told they will 'get back to me' before they ghost me or they simply never reply at all. And when I have tried to 'act as crew,' the companies who let me either minimize my involvement or find 'issues' in my work to the point where they can justify minimizing me even more, firing me, or even phoning me at home to tell me where I failed and even get dishonest and aggressive about how I am not 'a good fit' for certain things. I have several examples in my memory, but I will only share a couple of the more prominent ones.

This struggle of mine has been an issue since high school. The issue being that people get so uncomfortable with my quirkiness that they do what they can to keep me from opportunities, minimize my participation, or get me painted as 'aggressive' or 'unprofessional' so nobody will touch me professionally. This first happened to me in high school theatre where one of the bullies lied to the director and had me kept off stage for something I was involved in and made me feel like I was a monster. I've been made to feel like a monster for years and like I am unworthy of everything and nobody's ever taken accountability for it.

In 2016, I was part of the stage crew for a production of 'Jesus Christ Superstar' that was put on in the area. I was involved in the wardrobe department and also asked to serve as a supervisor for child actors/specifically child actors with disabilities. I took the training they offered and thought I was doing a good job. I went through opening night and again thought I did a good job, but then the afternoon before the second show, I got a phone call at home from the stage manager telling me that I was being "let go" because it wasn't a good fit for me and my behavior was bad. I hadn't been given any feedback prior to this phone call and I wasn't given any feedback within the phone call. And since then, trying to get involved in other productions has been very difficult, but I don't even know what I did wrong to get dismissed from that one.

Another incident occurred in 2023 when I volunteered as Front of House for another company's production. I got a little offended when another volunteer put a patron's walker out of their reach and said it was 'policy.' I asked the other volunteer why they couldn't have a little more respect for patrons with disabilities and I wasn't aggressive. I was just protecting a patron's right to accessibility. The other volunteer, however, told the theatre staff that I was aggressive with them and patrons and I got yelled at after the show was over. None of that was true. The theatre staff also phoned me at home the next day and regarding 'struggles I had with patrons.' They proceeded to say I was still welcome, but in a minimal role that was under heavier supervision, as if I was a danger. When I tried to defend myself, I was told I was being 'argumentative' and that I was 'seen as unsafe.' The staff also told me that they had been told by their 'Outreach coordinator' that I had been removed from the volunteer lists that other organizations in the area have and I have no idea who their coordinator was at the time, nor was I made aware that this was going on. The staff said that 'that issue has no impact on their organization,' but it clearly did, as why would they bring it up? They wanted to paint me as this dangerous person when all I really am is a person with documented disabilities who has been the victim of malicious gossip from people and organizations who can't be bothered to really develop patience and understanding for people with disabilities. They'd rather monsterize and minimize me and strip me of my worth and allow gossip to roam free than actually get to know the good in me.

I also have tried to get involved with the local film community for socializing and professional development opportunities.

I just don't feel like I fit in and I certainly try to include myself, but I am treated like I am nothing but a bother, and people in that community even acted outright annoyed when I tried to communicate my interest, so much so that I stopped even going to gatherings. It's the same when it comes to other social opportunities: I am made to feel unwelcome, my disabilities are minimized or mocked, I am seen as a monster, and I try to befriend people and offer them my trust and heart only to learn that they use those things against me, mock me behind my back, act like I am a problem, and find joy in telling others cruel things about me like "she has problems, but she is working on them" to everyone I try to foster a connection with. I am made to seem like a monster and endlessly treated like one even when I try to show I am not.

I've also faced this in my course of writing work. I've been a freelancer for many years, have education in how to tell stories, but I am not given a lot of respect or opportunities. Before COVID, I had done a good deal of work for a publication and thought it was respected. I even did a good deal of work during the early days of the lockdown trying to help gather and share information, work that I thought was helpful.

Sadly, it wasn't seen as helpful and I was quietly ghosted for the next three years and had to heavily invest myself in writing mostly unpaid pieces (save for one) to keep my writing skills in practice before I managed to find another position elsewhere through hard work of my own. Since then, I've done a lot of work for publications in the area when others weren't able to keep things running and then I was 'swept aside' at random moments and just told to deal with it.

I also put a lot of heart into my work, but the one who receives it always seem to find something wrong with it and they don't hesitate to tell me at every opportunity even though they are the ones who tell me to undertake the work. They've also done their best to minimize my budget and make room for other freelancers while telling me that there's not room in the budget for me to have more work. I was offered a greater position in the same company, but I was told in order to take it, I would have to commute and I couldn't make daily commuting for work doable and I was also recovering from some health issues, so I ended up losing the opportunity because it seemed there was no room for compromise. However, another freelancer in the same company was offered the same opportunity, but was allowed to work remotely. They're not at that level anymore to my knowledge, but I don't understand why they were offered accommodation when I was not.

I also keep making it clear to the powers that be that my increasingly limited budget is making it hard for me to accomplish the tasks I am set, but I am told that there is nothing that can be done about it. And yet, that same publication is putting advertisements forward asking for more freelancers and I have asked why they can't just give more work to the freelancers they already have and that asking for more freelancers is disrespectful to the work the already present staff do. I was told that the organization doesn't have to justify their behavior and that they want 'a stable' of freelancers. I have asked why they can't increase their budget by applying for grants for artists with disabilities, as they exist and would help increase the budget, and they know I have one, as when I first entered into a freelancing agreement with them, I was required on paper to identify myself as a person with a disability. I was told that they knew about that, but didn't do anything about it. In other words, they knew about it and didn't want to provide accommodations.

It seems this 'dark side' seems to be emerging more and more in both my community, professional life, and in my church. Whenever I try to volunteer for things, share my skillset, and my want to help others because I care about helping people, I am ghosted from opportunities, dropped from things I previously had a role in without a good explanation as to why, given silence, excuses, and promises that 'they will keep me in my mind,' while nothing is ever done to help me feel welcome to opportunities or even in my own skin. 

People have also taken to treating me poorly in spaces that preach inclusion and love and when I've spoken up about the bullying and how it's made me feel and how I feel like prey, I'm told that they'll handle it and that they're 'sorry,' but nothing ever changes and I am looked down upon for speaking up about wanting boundaries. I'm seen as the problem and nothing is done about the problems being caused to me. I've also been labelled as 'a stalker,' 'problematic,' and 'dangerous' for wanting and believing in friendship from people who encouraged me to be their friend. I've been gaslighted into thinking me and my struggles are the problem and have been told to get therapy quite cruelly. I've gotten therapy and come to learn that I am not the problem and that my feelings are valid and to give them space, but not let them dominate me to the point of crippling me. I am working hard to do that and talking about my struggles helps me to do that, but scars remain and people's continued mistreatment of my neurodivergent self are building up the scars and leaving a lot of mistrust in the air, not just for my others, but for myself.

The situations I continually face have made me hate who I am because others don't want to learn to love me or see beyond my disabilities to let me shine. I'm truly bothered that organizations who preach about how they love and include those from different facets of diversity would monsterize someone with disabilities rather than get to know them and their needs and help them succeed. They would rather bully me, call me dangerous, spread vicious lies around, and then find it funny when I am deemed as 'untouchable' and unworthy of love and good things.I admit that I am not a perfect individual, but I am not a monster.

I am a person with disabilities who is simply trying to make a happy, productive life for myself and I am trying to thrive with the gifts that I have and am also trying to embrace as many spaces and adventures as I can. I know life is not easy, but I am trying to make it a joyful one. I am trying to adapt to a world that is really struggling to adapt to me. But the world doesn't seem to want to see me as anything but a problem. I am a person with gifts, skills, a desire to do good and help others, and a strong desire to be involved. I am also a person with disabilities. I am a person, but am just constantly seen as a problem. People can't or won't look beyond the word 'disability' and they simply want to isolate me, demonize me, dehumanize me, and not help me understand what I need to do better and help me do it so I can succeed. They just want to slam the door, lock it, tell me to stay the hell out, and encourage me to 'be quiet' and take up as little space as possible. I care about helping people and being involved in bringing good things to life, but I am ghosted from opportunities, dropped from things I previously had a role in without a good explanation as to why, given silence, excuses, and promises that 'they will keep me in my mind,' while nothing is ever done to help me feel welcome to opportunities or even in my own skin.

It's made me hate who I am because others don't want to learn to love me or see beyond my disabilities to let me shine. I'm truly bothered that organizations who preach about how they love and include those from different facets of diversity would monsterize someone with disabilities rather than get to know them and their needs and help them succeed. They would rather bully me, call me dangerous, spread vicious lies around, and then find it funny when I am deemed as 'untouchable' and unworthy of love and good things.

I have been struggling with this for years: being made to feel welcome in spaces and opportunities only to be later 'torn apart' for being imperfect or not being able to meet expectations after being open about the fact that I can't always do that. I'm truly bothered that organizations who preach about how they love and include those from different facets of diversity would monsterize someone with disabilities rather than get to know them and their needs and help them succeed. They would rather bully me, call me dangerous, spread vicious lies around, and then find it funny when I am deemed as 'untouchable' and unworthy of love and good things. I'd just like to remind society that diversity includes people with disabilities and that people with disabilities are human beings worthy of love, life, and inclusion just like everyone else.

Those who preach to love and include all facets of diversity need to understand that including and loving people with disabilities and being accommodating to their needs is actually showing care to a facet of diversity to a group that is historically marginalized, dehumanized, demonized, ignored, abused, and treated like they are problems instead of people.

It is Disability Pride Month, but I am struggling to have pride in myself and the way I was made and what I can give to the world because many in the world can't see past my struggles to give positive attention and opportunities that cater to the strengths and the skills that I offer them.

There is a severe lack of respect towards people with developmental disabilities who want to involve themselves in communities of any kind and people with disabilities do not invite disrespect from others regarding their existence and the way they live their lives. They do not want it.

Yet, they earn it on a daily basis from those who have deliberately chosen to be scared, ignorant, and cruel about and towards people they don't easily understand. They only see people with disabilities as problems and not as humans who are utilizing all they can to get by on their own to the point of exhaustion, tears, because grace is not something that is offered to them nor do people remember them to be worthy of care.

And that, everyone, is the dark side of disability pride. People with disabilities suffering continually because those without don't want them to have pride in who they are or build a life they can be proud of.