What it Means to be Disabled — On Identity, Community, Adaptation, and Sharing Our Stories By Lyd Lacey

The term “disability” is perhaps the most broad and elusive identity label — and that is by design. There is no diagnosis common enough to have its own legal and social category. Furthermore, no two people with the same diagnosis will have more than a handful of similarities in onset, cause, symptoms, management, care, and treatment, and those are just the medical aspects. When considering the intersectionality of how race, socio-economic status, gender, orientation, native language, multiculturalism, and more, play into the experience of disability, you would be hard-pressed to find any two people who share more than a few elements of their story as disabled.

So why, then, is disability an identity at all if it is so broad? Simply put, to be disabled is to acknowledge that this world was not built for your body and/or brain. However, that acknowledgment comes easier for some than others. For many people with rare diseases, especially those who were diagnosed later in life, accepting yourself as disabled can be a very hard, real, and overlooked struggle. Let’s take a moment to reflect on that journey and shine some light on the different voices in our community.

During SRNA’s recent Rare Neuroimmune Disorders Symposium (RNDS), a panel focused on disability and identity spoke to the struggle of accepting disability. Maria, a panelist, shared her experience of using the word disability to describe herself to new people, “So [disability] was my one word, my explanation.” Having that one-word, easy explanation can be invaluable, especially to people with rare diseases. Instead of trying to hide your illness, or attempting to explain medical jargon most people won’t understand, describing yourself as disabled can allow you to be fully and unapologetically yourself.

Beyond just explaining herself to other people, “disability” also allowed Maria to understand herself better. “In claiming that identity as someone with a disability, it has opened the door to so many adaptations,” she shared. Accommodations that seem obvious, like parking passes, might not be to someone who hasn’t thought of themselves as disabled and thus hasn’t considered what disability services are available to them.

However, allowing yourself to identify with the term “disability” is easier said than done. Not everyone with a rare disease will be interested in doing so, and that is okay. Regardless of what terms you use to describe yourself, the advice shared by panelists still proves invaluable to all. Here is a quick recap:

1. Acceptance before adaptation.

To truly understand your body and get to know it well enough to be able to accommodate it, you must first accept the situation you are in. That may not be the same for everyone, so it is important to take the time to understand it. Ask yourself, your doctors, or others in your care team — will my body ever be the same? What do treatment, care, or management options look like? What resources do you have, and what resources do you need? Now that I have this diagnosis, what does healthy look like for me? As is the case with many rare diseases, remember that many of these questions might not have answers right now or anytime soon. Try your best to make peace with unknowing or evolving answers.

2. You don’t have be alone.

Acceptance is easier said than done. If it were as easy as snapping your fingers, no one would be reading this. But, as that’s not the case, reaching out to a therapist or mental health professional can be helpful on the journey of living with a rare neuroimmune disorder. Finding therapists who, even if they are not disabled or diagnosed with a rare disease, are familiar with many of the issues we face, is even better! Traditional therapy can be inaccessible due to cost, travel, and more, so be sure to investigate other options such as virtual therapy or sliding scale pay rates. Aside from therapy, community engagement is perhaps the most helpful tool on the journey of living with a rare disease. SRNA offers peer connect and support groups, which are free and easy to join. Building meaningful relationships with people who are on the same journey as you cannot be understated.

3. Allow yourself to ask for help.

As another panelist put it, “I feel that my biggest adaptation is just admitting that I need more help and being more compassionate to myself.” When the world you live in is not built for your body, it can be hard to give yourself the room to get the help you need. The most powerful thing you can do for yourself is to listen to your body and treat it with love and respect. For some people, this means using accommodations like parking passes, canes, or wheelchairs. For others, it might mean taking medications when needed, taking a day off, or advocating for yourself at the doctor. Give yourself the space and time to understand what you need, and then get those needs taken care of.

If nothing else, remember this — this journey is personal, long, and for many, never-ending. You are the only one who can say what is right for you, whether you want to identify as disabled, chronically ill, having a rare disease, or forgoing identity labels altogether.

Regardless of how you choose to describe yourself, you are welcome in the SRNA community.

Articles represent the views of the author and do not necessarily represent the views of SRNA.