Recognizing Disability

A Guide for Coming into Disability

Note: While this is meant to serve as a guide for people who are becoming physically disabled and people newly recognizing their existing experiences of disability (including chronic illness), I feel that this guide is helpful for anyone, disabled or abled. No guide is one size fits all, but I hope this can help supplement other resources that exist.

Recognizing Disability

The first aspect of coming into disability is conceptualizing what disability means for you. Some initial questions to consider are:

What is disability?

What does it mean to be disabled?

How do you identify disability in yourself or others?

Only you can define what these mean for yourself, but many definitions and models of disability exist.

Loss & Grief

As you begin to transition into a disabled body, the first sign of that change is often the experience of loss. Loss of ability, access to the world, hobbies, community, loved ones, and your sense of self are just some of the types of loss you might be experiencing. Additionally, when being a part of any marginalized community, you are now not only beginning to experience the trauma of discrimination that you’re personally facing but you are also exposed to a communal trauma of systemic marginalization.

Due to the ableist society we live in, every single person is internalizing ableism. Everything we see on the news, in movies, in classrooms, etc. is absorbed subconsciously to create a personalized narrative of the disabled experience. Weather or not that ableism is externalized doesn’t matter, because if you’re not actively dismantling internalized ableism and practing anti-ableism, then that ableism will hit you much harder when you transition into disability. The work to navigate this is constant, evolving and will change with time.

All of this is very heavy. Always unpacking, always processing, always grieving. But it does get easier to navigate, especially with the proper supports. To cope with this, I highly recommend seeking out appropriate support groups (many are online, Facebook, Discord, The Mighty are some great places to look) and considering grief counseling. Through this, remember to be gentle with yourself, cut off people if you need to, set boundaries, and do what you need to to support yourself and keep yourself safe.

Spoon Theory in Practice

A large portion of my disabled experience is simply just learning. Learning about my body, treatments, my limitations, and what I can still do. This dynamic learning often requires more language to explain complex concepts. This brings us to the spoon theory. If you don’t yet know about spoon theory, here’s the original essay by Christine Miserandino.

Spoon theory works to help explain the energy limitations of chronic illness and has been widely adopted by the greater disabled community. Essentially, it is a metaphor that uses spoons as a metric to showcase energy levels in a tangible form. Over time your spoons will change, different activities might require more or less spoons, and recharging your spoons may also evolve. This is why it’s important to use the concept of spoon theory to help you set boundaries with yourself and others.

For yourself, being able to identify your spoon levels and use them appropriately to ration energy can help you avoid falling into pitfalls like the “Boom-Bust Cycle” and better pace yourself. I put this into practice by creating lists rating activities by spoon levels. I have a master list of meals I can eat, categorized by how many spoons it usually takes to make the meal. This way, I can plan out in advance on low spoon days, like when I have PT, and know I won’t have the energy to cook a meal that takes three spoons to make, I can meal plan for the week and buy what I need for a one spoon meal that day. This can also be applied to things like chores and hobbies. I sort my to-do list by priority, and then by how many spoons it will take to do the activity. Knowing your spoon levels can assist in setting boundaries with others as well. I always have a standing appointment on Tuesdays, so I never make plans that day. I always ask for help with certain chores because even if I physically can get them done, I won’t have spoons for the rest of the day or even the week.

Accepting Disability

In order to cope with the loss of certain activities, finding accessible alternatives can go a long way. You might be able to find an adaptive way to still participate in a hobby, like adaptive basketball. There are also so many options for hobbies in the world, and you might be surprised by what works for you now! This is a good time to start to focus on what you can do, with adaptations, vs what you used to be able to/now can’t do.

Mobility aids are a beautiful tool. My advice is if you think that an aid might help you, you should at least try it! If it ends up not helping, or you don’t need it, you can always donate it. I also like to say (and my physical therapist likes to remind me) Just because you can, doesn’t mean you should.

And, of course, ask for help before your body demands it.

Disabled Liberation & Disabled Joy

If you have the spoons and time, you should prioritize learning about our history as a community (Crip Camp on Netflix is a great place to start) Additionally, you can learn about disability theory, models of disability, ugly laws, cripple punk movement, and our rights.

Disabled Joy is a concept that considers our joy to be a revolutionary act in and of itself. I use ‘joy’ here, rather than happiness, because while similar, happiness is based in the root word ‘hap’ meaning chance (as in mishap and happenstance), meaning that the experience itself is based in luck and external factors, and focus instead on the sensation associated with it– regardless of your situation, which is joy. Disabled joy looks like my partner sprinting while pushing me down the sidewalk with the wind in my face. It looks like a perfect day in Sims 4. It comes with safe foods and the healing power of accessible plauygrounds. You find it where it comes, and I hope you can find it in yourself.

Finding Community

The best part of the disabled experience, for me, is our thriving community. When it comes to community building, I always suggest online options first because they’re available 24/7 for most people, and you can reach community from your home. I’ve already mentioned online support groups, but also, online content creators are a great way to find community. If your social media following list is primarily able-bodied creators, especially ones who focus on activities that aren’t accessible to you, it can be really damaging to your mental health. This can help you to find friends who get what you're going through.

Self-advocacy and systemic advocacy resources from our peers and organizations can give you the tools and feel empowered to create change. Seeking resources by and for our community can be lifesaving. You’re reading one right now.

Welcome to the community.

♿️❤️ (wheelchair emoji, heart emoji)