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Ableism is a large issue and one that occurs within the community as well as outside of it. Over the past few months I have been processing through a series of negative interactions and now that the issue is concluded, feel that I can glean some important lessons from it and move myself forward from it.

This is both a sharing of an experience and a bit of a cautionary tale as I think there are some lessons to be learned from this. I hope this will help others avoid these issues, or at least be better able to manage them.

What happened

I have long been an active participant in BiRequest. I wrote about ongoing strife within the organization that occurred in August, which I will summerize as: several people took our primary facilitator’s behaviors outside of the group as inappropriate and proof that he should not represent our group.

One of the people leading that push set off my Functional Neurological Disorder(FND) symptoms during the second meeting in August, then demanded that I ‘calm down’. The assumption that my movement symptoms were intentional behaviors(rather than symptoms I could not prevent) is the heart of this particular form of ableism.

He and I were both in extreme emotional states – I was under extreme emotional stress, and so already symptomatic. The triggering incident for me was that a participant in our meeting identified himself as an active member of a group whose leader was attacking my friend.

That moment, when he demanded that I calm down, left me with a deep sense of betrayal. I no longer felt safe in the space or his presence.

He is painting himself as the victim(black egg) even though I did nothing to him, and he loudly reacted in a negative way to my being symptomatic.

A few weeks later, we had a mediation session, during which I lost my cool and yelled at this man for his behavior, which included sending me repeated messages about my friend’s “consent violations” and accusing me of threatening another person(who I had called to ask for information).

At the end of that event, he called my name and I lost control of my legs, which collapsed. Again, I was under a lot of stress and anxiety and that’s how my symptoms can present.

His response to my collapse was to roll his eyes, say “never mind” and try to walk away. When I regained enough control to speak, moments later, I asked him what he’d been going to ask and he said he’d been going to apologize to me.

I think I said ‘ok’ or something similar and he walked off.

I tried to let it go, tried to drop it, but I’ve continued to become violently symptomatic whenever I see or hear him. His presence now triggers my symptoms.

I made a point of making sure he was part of the facilitators to run the group(he had previously facilitated a meeting), but I expected that there would be further discussion about what had happened. Not his attacks on my friend, but his choice, twice, to assume that my symptoms were behaviors.

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Finally making an official complaint

I mentioned the ablism and my hurt to multiple friends who were also in leadership, but I knew that if I brought it up at a meeting, I was likely to lose my temper and say something I’d regret.

He volunteered to facilitate in February, so it felt like there was time, and each meeting we were digging into topics that really needed to be ironed out and there was so much to do. Each time, there just wasn’t time, and again, I really didn’t trust myself to express things in the calm manner I wanted them discussed.

Finally, I sent an email to the rest of the leadership sharing my experience and concerns about a week before he was supposed to facilitate.

The final result of that emailed conversation was that the next meeting would be devoted to the complaints process. That process would immediately be used to notify him of my complaint.

COVID19 hit before the next meeting, so everything since has been done via online platforms.

BiRequest is a diverse group, and that diversity has been a source of pride for me. I want ableism to be considered just as bad as racism, sexism, and biphobia.

The first meeting after he was told of the accusation included each of us recounting what had happened and explaining a response. I laid out his behavior and choices and how they had hurt me. I also made it clear that I was still symptomatic in his presence due to my emotional response to his treatment of me.

His response was to say that he had not done what I accused him of, that his statement was directed at another person(apparently he believed that there was only one event, not two) and when the request was made for him to apologize to me, he would not do so in a way that acknowledged any responsibility on his part(‘I’m sorry you interpreted things this way’, effectively).

He also repeatedly stated that he was disabled, too and it was because of his disability that he behaved that way.

At the next meeting, he insisted that he was the victim, that he brought that friend with him to the meeting because he was afraid that we’d beat him up, and he felt that my symptoms were a response directed at him.

It honestly was inconsistent and didn’t make much sense to me. The feeling I had and still have, is that he was using his condition as a shield to protect himself from any accusations of any sort and deny responsibility for any actions he took.

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Why was I claiming ablism?

Ableism is discrimination and social prejudice against people with disabilities. It often involves assuming that people with disabilities(or perceived as disabled) are less than people without disabilities.

In this case, the primary issue was that my FND symptoms(which I cannot control) were treated as behaviors(which can be consciously controlled). In other words, he assumed that I was intentionally insulting him when the fact of the matter was that my reactions in both cases were outside of my control.

In the first case, I was emotionally triggered by this friend’s presence and had uncontrollable symptoms(my feet stomped on the floor repeatedly, while my torso slammed violently into my legs). All he needed to do at that moment was nothing.

Instead, he treated me as if I were intentionally disrupting the meeting and demanded that I “calm down” which in this case could be interpreted as a demand that I stop the behavior. His behavior only increased my stress(and hurt) and could not be interpreted as an actual attempt to help, soothe, or calm me.

The second case was further confirmation – he again saw me have an uncontrollable symptom(my legs collapsed when he called my name), and responded to my “behavior” with rolled eyes for making a scene.

My symptoms can be severe and involve muscles that are usually under conscious control. However, that is how Functional Neurological Disorder(FND) works, and my symptoms aren’t behaviors.

His response was inappropriate, but I would have accepted a sincere apology for the misunderstanding.

I do my best to educate others on my condition, but I don’t particularly want that to be my primary topic of conversation.

I have been open about it and always have willingly explained my symptoms to anybody who asks, so he likely heard some form or other of explanation at some point.

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Hiding behind the disabled identity – a disappointing response

Instead of owning the pain he caused, or trying to understand the issue, he immediately denied all responsibility.

That response really bothers me.

He shared details about his condition that honestly don’t feel relevant(the upshot being that he was dealing with mental health issues and had been bullied in the past), and he kept repeating the idea that he was somehow the victim.

Here’s the thing: I also have an anxiety disorder and a history of mental illness.

Can a mental health condition alter your perception of the world? Absolutely. Can it impact your interpretation of events? Sure.

But does having a mental illness rob you of empathy?

Does it make you a victim?

Does it make everything that happens around you not your fault?

Absolutely not.

What had frustrated me in all of our interactions in August and September was his poor judgment and his lack of empathy or respect, combined with his disrespect for my personhood.

He threw judgments at me, made assumptions about my mindset, behavior, and actions, and then doubled down on those mischaracterizations.

If, all those months later, he showed an understanding of what he’d done or why I hurt, I might have accepted it as enough.

If he had shown an understanding that he had misinterpreted my symptoms as something I could control, maybe I would have been able to forgive him, or at least start some form of healing process.

Instead, he alternated between rewriting the narrative into one where I bullied him somehow or one where he abdicated all responsibility because of his mental health issues.

Never did he show an ounce of remorse for causing me pain, and never did he consider the possibility that there was anything that he could do to make things better.

What he did do disgusted me: he used his disability as an excuse for his behavior without even considering taking any form of ownership of his behavior.

To be clear: there are times when pointing out a disability is a completely valid reason to request accommodations or understanding. I just don’t understand how this could be the case here.

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An example of healthy interactions based on a similar issue

A year or two before this, I had a much more positive interaction with another disabled person within BiRequest’s space.

At the time, my FND symptoms were relatively mild and more difficult to distinguish from intentional actions.

At the meeting, I was sitting next to a woman with an invisible disability, who was dealing with pain issues. I was jiggling my leg a bit because if I didn’t do that, I’d have a more obvious symptom.

Unbeknownst to me, my leg jiggling was sending vibrations up her chair, dramatically increasing her pain levels.

Misunderstandings can happen, but the point is to respect others and not make assumptions.

She got my attention and requested that I stop jiggling my leg because it was causing her pain, and as she made that request, my whole body flailed backward in surprise.

She was shocked by the intensity of my reaction, and I was able to explain that I had a movement disorder and hadn’t been aware of her issue.

I apologized, she apologized, and she switched seats with the person next to her so that the problem wouldn’t continue.

We’re fine, remain friendly, and both got that the other one was also disabled and had needs.

We found a solution that worked because we both were willing to not jump to conclusions or insist the other acted with negative intent.

That’s what should happen, a healthy way to manage differences, with neither party jumping to conclusions.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Learning from this experience

In terms of disability, what I’m trying to get at are a few key points:

  • Ableism is not limited to actions by abled people against people with disabilities
  • Having a disability does not prevent you from expressing ableism towards yourself or others
  • There is a significant(but sometimes difficult to judge) line between limitations caused by disability and excuses based on disability
  • To grow, take responsibility for your actions, and manage your symptoms

I really want to empower others with disabling conditions, but to me anything that smacks of victimization tends to be unhealthy.

I’m all about regaining control when possible, and making decisions to actively improve your life. I hope you are able to as well.

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  1. It was only recently did I realise that disabled people can practice ableism. Reading this gave me the feeling of being bullied. If you speak up, you’re almost made to feel wrong or dismissed and that can be so infuriating. I’m really glad to know that you stood up for yourself and somewhere I am sure it would encourage others who are treated this way. And like you said, I hope we all grow and take responsibility of our actions.

    1. Shruti,
      thank you! It’s really important to recognize that those of us with disabling conditions can still practice ableism. I cannot stand bullies and do my best to live a life without them. Sometimes, they are unavoidable though. I know that I’ve occasionally pulled back in a moment when leaning in would have been the better option, but I do my best to correct my actions as soon as I possibly can.
      I wish I hadn’t had to go through this experience – but life is unpredictable and doesn’t always go the way we’d like it to. Thank you for the support and I hope others find power from this – because standing up for yourself is such a vital thing to practice.

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