How to Be More Disability-Inclusive in Your Relationships
We are siblings, children, lovers, friends, congregants and colleagues. If you value equity and inclusion, shouldn’t these values extend to your relationships too?
Humans thrive in relationships. Yet we face barriers in these relationships. As our parents, sisters, pastors, friends and employers, you have the opportunity to help remove the barriers which stand in the way of living our lives to the fullest.
The start of my journey
Navigating life as a person with a disability is a damn challenge. It is certainly the hardest thing I have ever done. Harder than growing up in an unsafe home, being in an abusive relationship, living below the poverty line, completing a practicum in a primary school, or coming out as queer while attending a conservative church. In 2013, I was diagnosed with fibromyalgia, systemic lupus erythematosus and anxiety. I’ve lived with the symptoms of these conditions for much longer and they tend to fluctuate depending on the stressors currently impacting me and the support system I have in place. During flare-ups, the pain is more difficult than I can describe and the accompanying cognitive and emotional symptoms make me feel like I will never be enough.
For many years, fearing rejection, I withdrew from close relationships with others. I have referred to this as being afraid of people. Even within the community of people living with disabilities, I struggled to share my symptoms, challenges or even the names of my diagnoses. This post is my first time doing so publicly.
This fear was not unfounded. When I first started to present symptoms I could not ignore, I found my support system to be severely lacking. Family members who I thought I could trust and rely on for support if things were ever really serious, turned out to be horrifyingly ableist in their self-described “tough love” approach. For many years, those ableist responses prevented me from letting anyone in. But eventually, I realized it had much more to do with their ableism than with me.
Once I started to form relationships again, I discovered the need to advocate for myself. This is almost as challenging as living with pain because communicating my needs could well be met with refusal or aggression. I have witnessed this in my own life as well as in the experiences of those close to me. As much as we can say that the responses are a reflection of the ableism endemic in our society, it remains yet another burden we must carry.
Yet as someone who participates in relationships with people or persons with disabilities, you possess the power to be more inclusive! You hold the power to educate yourself, research accessibility provisions and open the conversation, offer accommodations and remove barriers as well.
When someone communicates their symptom or diagnoses, you are allowed to educate yourself. I can’t speak for anyone else, but I have certainly been asked by practical strangers how a condition affects me. (Unfortunately, this is often followed by some piece of supposedly well-meaning advice like “go sit in the sun” or “mind over matter,” but I digress.) You don’t have to make us take on that emotional labor, we are not the gatekeepers of the internet! I for one welcome someone’s efforts to educate themselves regarding how they can be a more inclusive friend, housemate or girlfriend. My partner did exactly this shortly after we started seeing one another and not only did it make me feel seen, it also meant she knew how to help during a flare-up a few months ago.
Open the conversation
If someone communicates that they would benefit from a specific provision, such as closed captions in video conferencing software and videos streaming within training, please just do this. It isn’t hard and if you don’t take this step, you leave them in a position where they either take on the cognitive load of navigating an inaccessible setting or the emotional labor of continuing to advocate for themselves. I have witnessed this with my partner who benefits from the employment of this technology, yet often participates in settings where this option is not provided.
It is crucial to recognize that accessibility is about much more than the absence of stairs. I was disappointed to discover how many virtual provisions, which made my own world more accessible, vanished once more as COVID restrictions were wound back. Sometimes I feel too much fatigue and pain to leave the house, travel anywhere or socialize (either in person or online). It grieved me to see those provisions which made full participation in life a reality for me removed once more. At the times in my life when I most needed to attend virtual talks or church, I was unable to do so. Yet those conferences and festivals still claimed to have accessible options, which for the most part included only seats which were wheelchair accessible. Please understand, these are necessary too and I am not disputing that. However, wheelchair accessibility is the bare minimum and I think we as a society can do so much more.
Ergonomic workspaces are essential, and not just for those of us with mobility disabilities. The environment in which I work lacks this, so I was left with no choice but to request flexible work arrangements a couple of months ago. This negotiation was exhausting and the last thing I wanted to do was harm the business in any way, but I had personally reached a point that completing a four-hour shift with a laptop flat on a table, while seated on a stool, was just not an option. I pushed this struggle down, wanting to be like everyone else, to “pass,” to be “normal” and not rock the boat. This continued until I had a flare-up so bad I could barely use my hands for weeks, could not drive nor work. This alternative was so painful I was forced to advocate for my needs, no matter how difficult or anxiety-inducing.
Tear down those barriers
If someone communicates they would benefit from a specific option, then surely you have a duty as a human to make the effort to respond in an appropriate way? Certainly, the availability of closed captions on Zoom means that if you are aware of someone in your meeting who might benefit from them, this means that you have a duty to turn them on. The capacity is there within the program and incredibly easy but I contend that it is your responsibility to learn and thus do what you can to make communication in work and learning environments more accessible for your participants. In my own work, I have found closed captions to be helpful for students who struggle with verbal comprehension. Auto-generated captions leave a lot to be desired with their transcription of Australian English dialects, but they are helpful enough that I have students who now request them. I have enabled an option in Zoom whereby students don’t even need to verbally request this, they can simply click a button where a request appears on my screen.
Seize the opportunity
Navigating the world with disabilities is challenging enough — please don’t make it more arduous. I believe you have the power and the humanity to educate yourself, learn what provisions would be appreciated and help tear down the barriers we face. As our parents, sisters, pastors, friends and employers, I implore you to seize this opportunity and empower us to live our lives to the fullest.
This story originally appeared on Medium.