Who do you Matter for?: Activism When Your ‘Self Care’ is ‘Self Harm’


CW/TW: Self-harm and injury


“Who do you need to matter for?”

The question was posed to me in my first meeting with a new therapist. It hit me surprisingly hard and I had to hold back tears. I hadn’t actually considered the ‘who’ in my fretting and over compensating and pushing myself to the brink.


I have long ago determined that I must do everything at 100 miles per hour in order to make sure that I’m accounted for, that I am offering something to the world. That I am worthy of…what? I had never stopped to consider that what/who of the situation. With one question this therapist threw me.


I wish I could say that brief pause caused me to step back, take a break, replot the course. It didn’t. But it did make me consider who it is I want so much to be there for.  


I came into work today feeling less than capable of taking over the world, as I have for some time now. When putting together some dates for a lunch, we regularly had to question, “Is that restaurant accessible?” while trying to use Google Street View to catch a glimpse at the front door because we know that the answer we’d get if we called the restaurant was just as likely to be wrong.


This happens because, despite Federal laws and building code requirements, businesses regularly get permits to open businesses in inaccessible buildings.


This realization and frustration with inaccessibility in the built environment is what determined the course of my undergrad education and what I do for work now. It is why I got an Urban Planning degree and became International Code Council certified in Accessibility. At the time, and in my work today, I guess it’s what I need to matter for.


Because I have friends that can’t come to my house for my birthday or when they need to talk. I have colleagues that can’t just decide to go out after work without first scoping out the accessibility of the meeting spot. There are events that I miss because the space is too difficult to navigate in a flare.


Right now my email is full of the work of partners fighting rent increases in subsidized housing, work requirements for access to healthcare, and for disability representation in the media. All these are issues that affect the perceptions and ideas but also the very basic necessities of life for people with disabilities, POC, and low-income individuals.


Yesterday, I sat in a conference room full of women of color discussing how they are still told they cannot do or are unfit for certain work tasks based on their gender and skin tone despite being mayors, lawyers, CEOs, and public servants.


I watched trans friends be destroyed by the news of forced sterilization in Japan, and saw marriage rights be removed for same sex couples in Bermuda.


My need to matter, whatever that means, is for all those parts of me that belong in each of these categories. For the part of me that incessantly needs the world to be better.


But where does that leave my well-being?


I’ve been made a wreck with the continuous go-go-go of life but no matter how I try, I cannot slow it down. Yesterday, I had two separate panic attacks at work yet continued on my course. It is wearing me thin, and while the logical part of my mind is very cognizant of it, my feet keep moving, my hands keep typing, and my mind keeps racing from one thing to the next.


Do we take time for the ever elusive ‘self-care’ as people who care about others? What does self-care mean to a person whose main sense of relief often comes from things that are classified by professionals as ‘self harm’?


I haven’t cut myself in many years though the thought is regularly at the edge of my finger tips. Instead, I’ve moved on to less obvious — and admittedly less satisfying — forms of self harm. I pick my face, nails, skin until it burns and bleeds; I run until my lungs burn and I want to throw up, way past a runner’s high and a good cardio exercise; I pull at and out my hair.


While I would be quick to say I don’t do these things to harm myself (hey – running is even good for you!), they’re just coping mechanisms. Would I feel no qualms about a friend using alcohol, hard drugs, or risky behaviors as their coping mechanism?


If that’s the case, what options do I have? Doing my nails or going for a massage might have some temporary pleasure but it hardly releases me from the agony and chaos that is often residing in my head. What does self-care look like for me?


Recently I’ve seen blurbs floating around social media that ‘self-care’ does nothing for the poor who can’t afford the time off or pampering that is often associated with the idea. I feel like it doesn’t apply to those of us whose ideas of relief stem from self-destructive behaviors either.  One US study estimated a nearly 6% lifetime prevalence in self-injury; it’s not just girls or teens but adults trying to cope with their lives.  


So what are the options for people like us? A quick Google search brings up the same hotlines and coping skills I’ve seen my whole life. Taking a walk, calling a friend, petting an animal, focusing on your feelings…all which work to an extent, but never seem to provide quite the break I often feel I need.


This blog does not have an answer. I just know that people are hurting and often I feel I have to be involved in fixing that, but I can’t do it without hurting myself.  


It is hard to determine if ‘self-care’ is a myth or if the ideology of activism does not permit times of rest. Whatever it is, it must change and the disability community seems a perfect place for that to happen.


If anyone understands how difficult it is to fight under pain, how impossible it sometimes is to take place in a march or a sit-in, how necessary it is to take care of oneself, it is disability activists.


Maybe in our activism for a better, more inclusive, more compassionate world, we also must fight for ourselves. For a world where being a part of the fight doesn’t require nightly punishments. Where individuals feel supported in sitting out the next protest or backing out of the next phone drive as well as being supported when their time and effort is 110% dedicated to the cause. Sometimes we can only give 10% and stay alive.


Maybe sometimes a little self-advocacy is what we need for self-care.

Some Thoughts and Resources on H.R. 620

It’s been a rough week.  I have been watching H.R. 620 since 2017, but there wasn’t much talk because bills just like it have been popping up since the Americans with Disabilities Act (ADA) was passed in 1990.


I think many of us were too quiet and complacent up until the end. But the House is just one side of the equation.


ADAPTers and other members of the disability community did amazing work over the summer to secure our healthcare and we need to do it again. It is time to make the idea of passing this bill as vile to the Senate as it is to the people.


There’s a poem I love in the play FOR COLORED GIRLS By Ntozake Shange called “Somebody almost walked off wid alla my stuff” and while the context is different it’s how I feel.


Congress is trying to walk off with alla our stuff. Stuff that was fought for. Stuff that was protested for. Stuff that was chained to doors and crawled up stairs for. The Americans with Disabilities Act was won with bloodied knees and sore throats and it is time to protect it.


It may have passed the House, but we must let the Senate know that is not okay. We must keep the momentum building and the pressure on.



Write letters

Make phone calls

Tweet messages

Post on Facebook

Write press releases

Create blogs

Make videos

Protest outside of offices


Do what you know you can do. I will do my best to do my part too.  I plan to post further updates as this bill moves forward, as well as share resources for reaching out here and on Twitter.


To start, a list of all US Senators. Reach out to the ones in your state.



State Senators’ Twitter Accounts



Resistbot is a great tool if you are unfamiliar or uncomfortable reaching out through phone or mail. Text RESIST to 50409 to send messages to your representatives.

The American Association of People with Disabilities (AAPD) is holding their REVUP campaign to get people with disabilities registered to vote. They will have statewide coalitions to help #cripthevote. More information is available here

National Council on Independent Living issued a statement you can read here.

A statement from the ACLU can be read here.


A Convergence or a Fork in the Road

I have been going back and forth between writing a blog or leaving it be for some time now. I feel like I have things to say, but not necessarily anything that so many other people in the disability community and beyond aren’t also saying.

And then this week happened.

This week I have been exhausted. I have both ‘mental illness’ and chronic illness and both have been acting up.  A week ago I sat on my bed staring at a handful of pills I intended to swallow not because I was sad but because I am tired.  

Then I fought through this week to Wednesday where a young boy killed 17 people and every argument I see, on both sides, points to mental illness as the culprit. I see young people scared to go to school and people realizing that evacuation practices leave so many people with disabilities in danger.

Then I get to today, when the House has voted on H.R. 620 to amend the Americans with Disabilities Act creating notification requirements and waiting periods for people to make businesses accountable for their non compliance with the law.  On top of that my body is flaring and I am in so much pain it hurts to move.

And I think, now, I can’t not say things.  I am a person with significant mental illness who lives in near constant pain and exhaustion. I am a woman with disabilities who is an advocate by profession and a burgeoning activist.  I am a student of emergency management with hopes to change the way we keep people of all functions and abilities safe.

I am also a wife. A sister. Queer. Black. Hispanic. African-American. A million other things. I hope this will be a place to celebrate all of those while being truthful about the reality created by living within those intersections in our society.

It’s been a long week. I have a lot to say about it. I guess this will be the start.