My dearest disabled relative,
I hope you are having a wonderful day. I’m Margaret, an artist, academic and lover.
As a queer and multiracial disabled person, I exist in many ambiguous spaces. At times, these grey areas I inhabit make it difficult to show the full range of my experience and feel understood. I’m here to write a love letter for those of us who are never truly seen, a how-to on taking up space even when it’s hard, and a playbook for anyone looking to create community when you feel you are alone.
In this tumultuous time, we all need connection more than ever. Yet, for myself and many other autistic folks there is a fear that comes with being in community–unmasked. How do I tell people: the mask is welded to my face, and taking it off may entail exposure to a fair amount of flesh and blood you may not be prepared to see? How can we be seen when we won’t let ourselves be?
I hear a lot to “be honest with yourself” and to “trust the process.” For those of us who have trusted it and been told we are annoying or asking for too much: Ask anyway.
There will never be a 100% acceptance rate into others’ hearts–and there doesn’t need to be.
We do not need to be perfect or even likeable to be in community with one another. We also don’t need to agree on every single topic (beyond the notion that we all deserve care and love and our basic needs met). We definitely don’t always need to have ourselves put together. In fact, I’d argue being in disability community is one of the best places to not have yourself put together.
Community isn’t perfect, but to be a part of it, you have to open yourself up to the possibility that you may be loved anyway, mask off.
Along this line, reciprocity is major. When I give, I do not expect to receive. At least, not in an identical way. I make art and items for people to cherish and use and break and ask for repair and love all over again. I learned this from my grandmother. I still have the last blanket she crocheted for me–the kind with heavy yarn that most definitely made her arthritic wrists ache to lift–made in my favorite colors. She never expected a blanket back. What I gave instead was my time and affection, my arm when she needed support walking from the car into the house, my strong body to carry her oxygen tank, and gentle hands to hold onto her own. This is community. This is intergenerational, Indigenous love which sees caring for elders and children not as burden or even responsibility, but honor.
This ask to be seen and held is not a one-sided ask. You must also be willing to hold others, in spite of everything. You must be willing to lay down the weapons you’ve used to defend yourself, and surrender to the hope that you may walk through the battlefield into someone’s warm, open arms.
Still, in all my Madness and my psychiatric disabilities, there are certain things I have not and may never admit to needing help with. I don’t really want to tell you that I need you to sit beside me while I fold my clothes, not because I need you to help me, but because I just need to know you are there. I definitely don’t want to tell you that I sometimes cry while brushing my teeth because the sensory experience of a toothbrush in my mouth is so terrible, and that I don’t know any other option besides just dealing with it. I especially don’t want to let you know that the footsteps you hear in the middle of the night is me checking the stove was off–five times in a row–and that when I laid back down I still couldn’t remember if I truly did it.
Yet if you told me any of these things I would sit by you, and maybe even hold your hand to let you know I love you regardless. We have to try, and to trust. So, when you are having a hard time knowing where to go, these are my tips on building community.
Reach Out. Ask someone you love or want to love and say “I’m having to reconsider some of my access needs. Would you talk with me for a short while?” in whatever way ‘talking’ looks like for you.
Offer Support. The village is a give-and-take sort of environment. Don’t feel too comfortable only ever asking. Make sure to offer, and to reciprocate in the ways that are viable for you.
Think Sustainably. Some people may only have the bandwidth for chatting twice a year. Some people like being in your living room everyday after 5pm. Think about what you need and what you can handle, and determine the ways you can show up for others.
Respect Boundaries As much as we need to prioritize our needs, this should not take form as disrespecting others’. If someone says no, accept the refusal and move on. Additionally, assert your own boundaries kindly when it is needed.
Love without Abandon Do not expect permanence. It is important to show people why you love them now. Give love to others like your life depends on it. And so it is.
Thank you for listening to my confession. I sincerely hope you can return my feelings of wanting to love and be loved.
Sincerely,
♡Margaret
(P.S. For anyone who still doesn’t want to talk about their disabilities, my inbox is always open.)
Margaret McKelvey (she/they) is a graduate student in the Disability Studies M.A. program at City University of New York, School of Professional Studies. They have worked in disability justice advocacy at the American Association of People with Disabilities, the Autistic Self Advocacy Network, and Lawrence Livermore National Laboratory. Margaret continues to develop her skillset and network as a disabled and Mad activist.
With a background in neuroscience research and a love of learning, they plan to continue their academic journey and pursue a PhD in Disability Studies. They are also interested in teaching, and are currently exploring what the process of education may look like outside of a Western and colonial academic setting. Given her personal experience as a queer and multiracial disabled individual, she aspires to establish research within the disability space that is inclusive of varying identities and experiences. Beyond her academic and professional careers, Margaret also enjoys creative activities such as drawing, beading, and writing, and incorporates these practices into her daily life.
Photo Credit: Jeevan Portraits