Disabled

Disabled.

Why are you such a dirty word?

Why, when spoken do you bring a feeling of less than?

Disability.

Old. Frail. Perhaps lazy or a drain on society?

If she is disabled, does she not work?

You’re too young to be disabled.

Have you tried walking?

Have you tried essential oils?

Have you thought about cutting out dairy or gluten?

Maybe drink more water.

I have a cousin who swears by avocado oil.

Gasping, tearing, clawing at my chest for a breath.

Please Jesus help me. I don’t think I believe in you, but God take this helpless ache away.

Denial. I don’t need help. I am not disabled enough. I cannot leave the house. I cannot stand long enough to do the dishes. I cannot shower. I drop my fork and cannot even cut the food myself. “I am not disabled enough” plays on repeat within the echo of my mind. Three weeks have passed by and I have not opened my apartment door to go outside. Alone. Maybe it’s better this way.

Grief. I want to travel, to dance, to pick something off the ground once it’s fallen…including myself. I did not see this as a possible future for me. Not once when I rolled the dice of my paths was “broken down and disabled” what I envisioned. The grief that I felt ran deeper than I could have imagined. I felt the loss of who I was as an able bodied and productive member of society. I mourned the idea of who I could become. I mourned all the possibilities of places I would go, jobs I could do and dreams I could have. In a split second all of my expectations had to be adjusted. I went from lifting 50 pound hay bales to struggling to unclench my hand long enough to brush my hair. Pride for my body turned to hatred. I cried. So many appointments, blood work, injections, infusions, MRI, questions, medications – every spare moment was filled by the deafening silence of waiting in the doctor’s office. I spent so many years learning to finally appreciate what my body and mind could do for me. Betrayal. Learning to accept an entirely new body was hard as hell. It still is. Grief; I became its companion. Goodbye old me, and hello new me. If, like the seasons, I change again – I welcome you with open arms.

Acceptance. “I am disabled” I say out loud for the first time. It stings and it releases. Inhale. I convince myself to go to the store with a swarm of bees in my stomach. I remember the exact moment. He welcomed me with surprise that I was able to manage so long without a wheelchair, cane or bath chair. I explain my apprehension and he smiles. “You are certainly disabled enough, you should have come to see us sooner”. Exhale. I walk outside with my first cane, what a beautiful teal shine it has. I find a pink pom pom and clip it onto the handle. I look for a community and it finds me. These are my people. Learning and so much unlearning. I deserve to have mobility aids that do just that – aid me. The craving for freedom returns. I name each mobility device and make them my friend. I am only going to get more sick. There is no cure. I don’t have to be happy about my situation, but I propose a truce. Cutting ties of who I was and what I could do. Letting go of “well I used to be able to do that” and “I must be such a drain on my partner and friends”. I wave a white flag to give myself the peace I know I deserve. Acceptance is my form of self love now. I cannot fight what simply is.

Anger. ‘Accessibility’ is a dream. A distant, unlikely one. I WANT to go out. I NEED to leave this godforsaken apartment. Clicking furiously on website after website, hoping an outing may do me some good – is it accessible for me? The answer is often no and frequently unlikely. “Look at me damn it” I want to shout. Countless times strangers assume they need to approach the person pushing my chair… and not me. Even when the question is regarding me. “I am capable of speaking for myself” I tell them. Partially as a reminder to myself that yes I am capable. I am disabled and capable. Wounded, furious and disgusted with the lack of compassion. Everywhere I go, or even want to go, the lack of accessibility is angrily glaring at me. How can we live in a society with so many disabled people without a prevalence of accessibility? Simply put – easily. Turning away from the problem is easier than accepting we are all guilty.

Empower. Speak softly, don’t cause too much of a scene, know your place. My anxiety tells me to lower my head, but my heart implores me to speak up. For myself and for those who have yet to find their voice. Each time I do so, it comes with a little more ease. Whenever possible I hold space for education and kindness. Encouraging myself to ask for help when I need it and not feeling such deep-seated guilt in doing so. Take back my power and regain control of what I can, even if past me thought it was so simple. Making space to celebrate all victories, no matter how small.

Compassion. I realize that I did not consider accessibility an issue until I myself was disabled. I learned to accept my situation and to hunger for life again. The pain sets in when barrier after barrier stands between me and what I dream of. Every day is a struggle to complete tasks I previously never would have blinked twice at. There are moments where I wonder if speaking about my experience seems annoying, full of complaint, or attention seeking. I sat with those ideas for a while and I settled on yes, all of the above. Shining a light on my reality means complaining and may be annoying to many people. Attention seeking? Absolutely. There is a need for attention to be brought to the lack of accessibility and general respect for disabled people. So I hope my voice is loud, nagging and echoes. I can only hope that among the millions of voices mine may be heard and plant a seed somewhere. While I am learning about what it means to be disabled, other people who face the same struggles can find solace in my words. I certainly don’t have all the answers, I am new here myself and often wonder how I am supposed to pick up the responsibility of teaching able bodied folks to fix this mess. This society was specifically built for production and it is clear that many of us are simply not made for that kind of world. I move forward with hope that we can do better and gratitude for the body I have at this moment. Compassion does not always come easy. I am disabled, not dead. Giving up on myself is not on the agenda, not when we have so much left to do.

• Madam Frost