Don’t hide behind your disability

This post doesn’t apply to everybody, but I think most of us likely know a person or two who could use this advice.

What I’m talking about is mostly applicible to people stuck in a victim mentality, but it is something that any of us with disabilities need to step back and reflect on every once in a while.

The idea of not being able to do something because of your disabling condition is very real and very legitimate. However, we also sometimes fall into a trap of letting our conditions limit us too much or using our condition as an excuse not to do something that we aren’t sure about or don’t want to do.

Fear can hold you back – be more self-aware!

There is a fine line here – sometimes we really can’t do something, and sometimes we’ve learned through painful experience that while it may be physically possible, it’s too painful or exhausting to make sense to do on a regular basis(or in the moment).

However, sometimes people let it go too far, or fail to check in with themselves regularly.

Self-awareness and self-evaluation skills are essential to living a good life while disabled. What do I mean?

Well, when we first become disabled, it’s a loss, and often is traumatic. We need to spend some time grieving the identity we lost, and learning to befriend our condition.

However, after that, it’s really helpful to understand our limits.

For some people, these limits are physical(either unable to use certain parts of the body, pain on using said parts, or lack of sensory input of one sort or another), while for others it’s mental(cognitive fog, challenges in comprehension, altered perspective), or emotional(lowered emotional control, more difficulty acknowledging emotions, or more challenges in processing or expressing of emotions).

Often, people have a combination of issues – and most of us are dealing with some form of fatigue due to our conditions and how society responds to them.

Altogether it can be exhausting, and it is hard. But ideally, after becoming disabled, we start to learn our bodies’ new limits and boundaries and gain an understanding of what is and isn’t safe or feasible for our bodies and minds in that moment.

Having that realistic self-assessment lets us know what we can do or handle, what we can’t, and what’s in that squishy middle ground of either ‘maybe I can’ or ‘I can only do it on a good day’. It’s that squishy middle ground that I’m concerned about.

It feels like some people hit a boundary – something in that ‘maybe I can do it’ space, and back down the moment things don’t go right. And then they declare that to now be in ‘nope’ land – something that’s no longer an option. And the moment it goes there, that’s where it stays and it’s now off in ‘impossible’ land – leaving the set of options that they could do smaller.

People fail at things, that’s part of our nature. Nobody can do everything perfectly every time. And our abilities vary.

Many of us have good days and bad days, with different limits, different constraints. We have different limitations over time, too.

Some conditions heal or flare or go into remission. Muscles can be developed(or allowed to atrophy), and different medications, technologies, or adaptations can be tried.

To me, very few things need to be in the ‘impossible’ category, because there’s likely a way to adapt, learn, or modify your way to success, if that’s a priority for you.

It’s completely reasonable to adjust your expectations based on your condition

I know that strong emotions – mine or others’ are likely to set off or increase my symptoms. I can’t prevent my symptoms from happening, but I am forwarned by my self awareness that being in spaces of emotional volitility is, in itself, a trigger for my movement symptoms.

This means that I need to plan ahead and prepare for that possibility.

For example, I knew that going to events at BiRequest while tensions were high was likely to set off my symptoms.

My solution for that has been making enough friends in the space aware of that that they were prepared for me to be rocking and rolling during the meetings.

When I go out to large events, I don’t go alone – I make sure that I’m meeting up with reliable friends who can be my ‘somebody else’s problem’ field and protect me from well-meaning(or not so well-meaning) strangers misinterpreting my limp, rocking or other symptoms.

I use how good or bad my day is as part of my decision-making process. If I’m extremely sensitive or have a lot of life stress going on, I simply don’t go to large venues with a lot of people – or I decide not to go out at all if my symptoms are too strong.

My point is that when these things happen, what I don’t do is say that it’s impossible. I don’t cut out the options altogether – I simply adjust my behavior to account for my anticipated symptoms.

I don’t want anybody to give up, no matter how intense their symptoms/condition.

Take a break, sure. But don’t give up or rule out the things that aren’t impossible – as long as it’s something that you want to do.

Understanding and explaining your symptoms is vital

I want to be very clear about this: I fully acknowledge both that ableism exists and that people with disabilities do have limits we need to work within.

I just want to make sure that the limits we acknowledge are the actual limits, rather than the ones set by ableist beliefs, and that we don’t become victims to our own fears.

If I bump into somebody because my symptoms are acting up and I’m in a tight space – I absolutely apologize for the unintended touch.

I will recognize that the reason it happened was because of my FND and us being in close proximity. My condition is the explanation for why I bumped into them.

However, it’s not an excuse. If I happen to bump into them, it doesn’t mean that I ignore that we touched, and it doesn’t mean that it didn’t happen.

In the situation at BiRequest, I became symptomatic during a meeting.

The emotional trigger for me was somebody mentioning their membership in BiNet, USA. The reason it was so triggering for me was that the president of the organization, Faith Cheltenham, was behind the attacks that have so disrupted the BiRequest community for the past year.

My emotional response was physically visible due to my FND(Functional Neurological Disorder), but I did not do or say anything in the moment.

The man who demanded that I calm down self-describes as having an anxiety disorder and was one of the people attacking my friend’s position as lead facilitator.

I can understand that he felt overwhelmed in the moment, and the possibility that his admonition to ‘calm down’ may have been partially towards himself, and an attempt to regain control.

I could see him explaining it in those terms(though he did not), and if his next step had been to own his behavior and the inaccuracy of his interpretation, I could have accepted an apology.

However, instead, he basically said ‘my disability made me do it, so it’s not my fault!’

There is no ownership in that, no space for learning, no space for growth, and no space for understanding.

Also, it’s incorrect. His disability may very well be why he felt somehow threatened by my being symptomatic, and it may be why he felt the need to respond.

But he chose to respond by demanding a change in my behavior.

He chose to speak, instead of being quiet.

He chose to later deny any responsibility on his part.

He could have explained that he saw my symptoms as behaviors and felt threatened by them. He could have apologized later for making assumptions about me.

To this day, he hasn’t taken ownership.

To this day, he has insisted that somehow he is the victim.

I’m trying to get past my anger, because I can’t expect or wait for him to own his actions.

I need to take care of myself and recognize that he’s doing himself more damage than he’s done to me.

This post helps clarify the differences between explaining and making excuses if you need more examples or another perspective.

Taking responsibility

While most of my posts are built on taking responsibility or regaining control, I again want to be clear: there are things that are outside of our control and not our fault.

However, how we respond to these events is generally within our control.

What do I mean?

Well, I cannot prevent myself from having FND, but while I could have responded by giving up, I instead have dedicated much of my energy into understanding the condition, understanding my personal limits, and doing my best to create my best possible life while living with this condition.

I could have given up when I was diagnosed and just become dependant on others, or refused to take care of myself.

Instead, I have basically alternated between focusing on improving my physical and mental health and building up some form of passion project/career.

My goals have shifted over time, but whenever I was doing well enough, I’d put energy into growing as a human being, and when I wasn’t(or had overdone it and gone into a severe symptom flare), my focus was on regaining my health and self-control until I could do more than just my life-improving habits.

You can choose whether or not to take ownership of your life – and focusing on explaining your limitations and finding ways to do the work you want anyway is a huge step forward.

On the other hand, if you make excuses for yourself, and blame your symptoms, you’re unlikely to move forward and likely to hold yourself back – denying yourself space or opportunity to grow.

Ownership is all about looking at any situation and thinking about what you can do/learn/ask/be to improve a situation, instead of blaming others for failures or challenges.

Ways that I have taken ownership in my life

As an example, I take ownership of my and my partner’s medical appointments by checking and double-checking in advance that the office has the information they need, that I know when and where my appointment is, and by otherwise ensuring that there is nothing to derail the effectiveness of my appointment with my doctor.

While some aspects of this should just happen, and other aspects are generally managed by the office staff, I’ve learned that double-checking and pushing back helps ensure that I get the care I need when and how I need it.

I also take extreme ownership of my mental health.

I recognize my tendency towards anxiety and depression and do my best to manage it.

How?

I practice techniques like mindful self-compassion, gratitude, and meditate regularly.

I also have trained myself to recognize symptoms of slippage in my mental and emotional health and use those techniques to pull myself out of any funk I may start to slip into within hours or days, instead of weeks or months.

When outside events start to impact my state of mind, I take time to recognize the reality of those situations and then find ways to counteract it and/or distract myself from those stresses.

As an example, I recognize that isolation isn’t particularly healthy for me, so during this pandemic, I have done my best to actively reach out to friends and family so I continue to have social connections to help me get through it.

I don’t wait until I’m feeling lonely – I recognize my extroversion and make sure that when I think about reaching out, I do so.

When it comes to physical limitations, I have spent a lot of time and self-examination getting to know my personal energy boundaries, and how to manage them.

I have consciously made decisions not to do certain things because the effort to reward ratio is too low. For example, I don’t drive.

Driving is highly stressful in New Jersey, and I cannot control what happens at my destination. I’ve had too many times when it’s not safe for me to drive home.

It’s much easier and safer for me to get rides or use public transportation so I can fully enjoy(or manage) my time out without worrying about driving home.

I blame no one for these limitations and acknowledge that they are the result of my having FND, not the influence of an outside force.

I recognize the consequences of that, such as needing my partner to take me places, using public transit systems, or only being able to go to certain events if somebody is willing to bring me along.

Conclusion: you deserve to grow as a human being

Having a disabling condition isn’t easy.

There are a variety of challenges, both from the actual limitations your condition comes with, and with the way society as a whole may view or treat you.

Making excuses is a common act, but one that does you an extreme disservice. While each condition has its limitations, these are boundaries for you to push or live with, not dictates by outside forces that you have to bow to.

You can, and should assess your own capablities and limitations, and recognize what they are and what they mean in terms of your life and quality of life.

While your condition certainly can be used to help explain why certain thigs occur or why you have particuar needs, it shouldn’t be used to limit your options or reduce your ability to take responsibility for your own actions.

Yes, disabilities come with limitations, but they don’t excuse you from taking responsibility for your life or actions.

Think about your life and life choices. When something goes right(or wrong) are you able to explain how and why? Or are you too busy looking for others to blame for the sucess(or failure) of your attempt?

If your interactions with others are disappointing, can you point to something in your own behavior and choices that could prevent those result in the future?

Do you take ownership of your actions and their results?

Do you accept blame or responsibility if you need to?

Think about your life.

Where have you taken on extreme ownership?

Where have you let yourself off with excuses?

What can you do to take back your life, and make excuses a thing of the past?