In Fierce Loving Memory of Justin Marcus Cooper

Image Description: Rows of images of Justin, a black man who uses a power wheelchair, with (1) Kennedy’s cat (2) Kennedy at an outdoor event (3) behind a camera with support people outside (4) dressed as a superhero with Kennedy and Kieran (5) tabling at a fair with Kennedy and Kieran and (6) dressed as a super hero with 4 others dressed as super heroes.

By Kennedy Dawson Healy

Sometimes in life you have an obligation to go to funerals of old relatives with bad behavior and politics. You have to dig to remember nice things about them. You sit in a circle of cousins and talk about the good candy they had at their house, or a funny story that was more about circumstance than their actual humor. When people like Justin Cooper die, it's the opposite feeling. His community has been flooded with devastation precisely because he was so good. You’d have to dig to find anything bad to say about Justin. Anything you’d find sounds like a bullshit answer he could have given at a job interview to the question “what are your weaknesses?” He was too nice, he gave way too much and took too little, he was stubborn in receiving care but not in giving it, he was idealistic about the world he wanted to create. When people inevitably die, we are taught to prop them up in eulogy. Our society finds ways to do this with even the most evil men in government. It's what you’re supposed to do. This eulogy is not of that category. Everything I am writing about this man, and his work, and the way he made people feel is honest and genuine and the truth. 

I met Justin Cooper as a young person in disability movement work while interning at Access Living. He was a member of the Young Professionals Council there. We could never pinpoint the exact moment we met. But I remember one day the office was buzzing because he was coming to the building. After hearing this multiple times, I said “who is Justin?” Everyone responded with the tone of “who are you not to know who Justin Cooper is?” He had this effect on a space. I saw it until the very end when I visited him in his rehab facility and all the staff responded to my using of his full name with “oh, JC - he's in this room.” When he took a turn for the worse, I’d never seen a hospital waiting room fill to that size with such speed. 

He was smart and funny and so charming. I am getting messages from people who barely knew him telling me so. My news feeds are full of memories and photos and people professing they had a crush on him. A lot of what I am going to say here has been said and I am going to say it again. Justin came from a family of activists and knew how to meet people where they were at and bring anyone into movement work. His sweetness was abolitionist praxis. A practice he is still teaching us. He knew tearing down big systems and building new ones is done one relationship at a time. Many people have written in recent days that he was their first contact with the disability community. Many have detailed a hard time when he was there for them. Everyone is reminding me that his laugh and giant smile and energy were infectious. 

Justin loved art and creating things. His photography and film work shared perspectives on disability and accessibility with the world. He loved music, sports, a good steak, anime, his play station, and WWE. He loved his mom more than anything. And his community. He served in so many roles and projects for disability rights and justice work I won’t be able to list them all. But here is an attempt: 

Young Professionals Council at Access Living 

Advance Your Leadership Power at Access Living 

Chicago Disability Pride Parade Planning Committee 

Chicago Disability Activism Collective 

Illinois Partners for Human Service Board

His own media company, Cooper Industries

Junior Artist In Residence for the Disability Culture Activism Lab 

3Arts/Bodies of Work Residency Fellow

The best part of my endeavor with Crip Crap has been the work I did with Justin. I’m so grateful to have had a small but mighty podcast with him. I knew I needed Justin’s sharp perspective and buttery voice. I was shocked that he did not hesitate to agree to my risky plan of an unfunded project with the word crap in the title. We got close through our love for and belief in our work and crip community. The days he’d come over to record were the best. We’d make tea and eat snacks and he’d take photos of my cat to post alongside the episode graphics when they’d drop. He could get along with any guest I’d book. He had incredible insight and a familiarity with people that made everyone feel seen and close to him. 

We also did two five-day film challenges together that Justin directed. The first was about a disabled superhero getting only ableist news coverage. The second year (where we overextended ourselves even more) was a pretty bad and silly reality TV puppet show. He’d come to table with me at events and we once shot an ad trying to guilt non-disabled people into giving us money by asking (doomy medical commercial style) if they suffer from able guilt. It was my bad idea that barely worked that Justin, again, went along with. We didn’t have enough money for our regular care needs, let alone someone to assist us with shooting a video. So my neighbor came down to set up a cheap tripod I had purchased which promptly fell minutes after he left. We laughed really hard as I tried to fix it and it continued to fall. Justin knew surviving ridiculous lives required laughter. 

Our last times in person together were in his hospital and rehab hospital rooms. We got into a routine where I’d sneak into the cardiac ICU when he was staying there last and recline my wheelchair next to his bed and watch whatever he’d left on TV. He would wake up and try to entertain me and I’d scold him for scaring us with his most recent health drama and insist he rest and not worry about me. He would tell me it was nice to see a familiar face and then fall back asleep and then eventually wake up and tell me the intricacies of the Marvel movie ending on TV or that it was time for WWE or a basketball game. He’d let me bad mouth the institutions he was in as long as no nurses were within earshot. On one of his worse days in rehab I gave up trying to convince him of anything and we sat and looked out the window and talked about his life and liberation and god and the afterlife. 

Our last work zoom call was with fancy documentary filmmakers who got the same grant as our podcast. There was an ice breaker asking what we had done on Memorial Day as the call was the day after. I answered honestly that I had gone to Sonic and watched Bridgerton with a friend. When it got to Justin’s turn (multiple people later) he said what he had been up to and then ended by joking “I guess Kennedy was at Sonic, but I didn’t get an invite.” I could feel the zoom room fall in love with him. 

When I say Justin Cooper was too good for this world, I am talking about both its badness and his goodness and the relationship and gap between these two realities. The ways he stayed soft and kind and hopeful in a harsh world. How he wanted to fill this gap by bringing the world to his level. To make it a livable place for disabled people of color and all people. And how the care and other racist and ableist systems we live under failed Justin terribly especially at the end of his life. In the end, Justin was stubborn and proud and private and resistant. I am grateful to have been a part of Justin’s life and for the ways he did let me in. I am also so angry at the ways he was discarded by systems. We live in times where grief is extremely political. Justin had a way of synthesizing emotions like anger. He knew exactly how to transform bitterness through the work. I plan, like Justin, to store my anger and grief about him within future-building work. I know the best way to honor him is by continuing his work toward a world that deserves and can keep people like Justin. The kind of world he envisioned and was actively creating. If he were here, he'd invite you to join us with grace, generosity, ease, joy, and a bit of humor.  

Donations to Justin’s memorial fundraiser can be made here: https://www.gofundme.com/f/justin-marcus-coopers-memorial-costs 

Learn more about Justin below:

https://chicagoreader.com/city-life/people-issue/justin-cooper/ 

https://www.audacy.com/wbbm780/news/local/2024-chicago-disability-pride-parade-to-honor-justin-cooper

https://wheelchairchronicles.com/ 

Freeing Palestine will Free us all: An American Crip Perspective on Breaking Rules Towards Better Futures

By Kennedy Dawson Healy 

Content warning: hospitalization, pain, surgery, disability, abuse, suicide, care, genocide, Palestine 

On April 22, I slept in my electric wheelchair at one of the best hospitals in the world – Chicago’s Northwestern Medicine. I have nine doctors through this medical system. It seems as though I am reminded how well ranked the hospital is every time I enter, get an e-mail from them, login to my online portal. Unfortunately for the medical establishment, Crips are done with surveys and letters when institutions with this level of renown and arrogance fuck us. Following Alice Wong, disability media trailblazer, we’re writing articles. Her work on medical mistreatment can be read here, here, and here.   

I was at the hospital for a second procedure (the first from 2021) to remove kidney and bladder stones caused by my catheter. The catheter is a device I elected to have surgically implanted due to a lack of in-home care and accessible public restrooms. My doctor didn’t prescribe an antibiotic irrigation that could have prevented this because it is difficult to get insurance to cover it. Insurance crack down on disability products has escalated throughout my life. 

Still the privilege of having access to a medical procedure where, with minimal pain, my doctor entered my bladder and kidney through my urethra is not lost on me. Especially after watching, from on the ground accounts like Bisan’s, hospitals in Gaza being blown to bits for months. People giving birth and getting amputations without pain medication or anesthesia. But genocide cannot become our baseline. 

My procedure is not as invasive as the first. They consult my pulmonologist this time to get me the correct anesthesia for my neuromuscular disease. The procedure goes really well but is still hard on my lungs. I had been denied a private recovery room and the use of high quality masks for COVID prevention. I have to constantly advocate for staff to wear surgical masks.  

I have been asking for these measures for weeks, as well as a pressure relieving bed for recovery overnight. This is the only kind of bed I have slept on for the last 12 years. I am moved from the cot, to an OR table, to a standard hospital bed. I am kept in recovery and told my bed is being cleaned for around 6 hours. I opted to be alone because that was about how long it took me to wake up last time with the bad anesthesia. I was only notified I would be staying overnight four days before the procedure. While the hospital provides inadequate care, the state will not provide care services to anyone while they’re hospitalized. 

That morning, when we asked what time I would be able to access the good bed, my care worker and I snickered at the anesthesiologist saying it depended on “bed flow.” This is when I should have known I was screwed. I was on hard surfaces for 14 hours. I am transferred to my room and told I will get my bed there. My fat, gimpy body is more than ready for it. My healing requires my blood to flow. The pain from the bed is worse than the pain from the surgery despite both being masked by pain meds. Last time my bed was ready in my room. This time I am told it needs 12 hours to inflate and it is unlikely I will get it at all. 

It is nearly 10:00 p.m. I have been at the hospital since 8:00 a.m. and got very little sleep the night before. I try rolling on my side. It is worse. I know that I am likely already marked crazy for my persistent mask requests. And, well, Audre Lorde tells us that our silence will not protect us. I leave my call button on. I yell from the room, pitted against other patients in pain. “Help. I need help.” I say I want to sleep in my wheelchair. I want to go home. Non-gimps who get this procedure are not required to stay overnight. They tell me my chair is a fall risk. I cannot walk. It has a recline feature, a seatbelt. I have never fallen out of my wheelchair on flat ground. I tell them this. I call the care worker who has my van, who was up at 4:00am to get me there for $17.25/hr. No answer. I call my mom who lives out of state. A social worker mother hits different when you’re 29 and she’s 63, but it's worth a shot. Institutions need to know when we have people outside who are paying attention. She tries to call the nurses station on two different phones but never gets through. 

I call my care worker who is watching my cat to come up to the hospital. Their Uber from my house works faster than any actual results from the call button. They bring our friend who is with them and they begin putting the sling to my Hoyer lift underneath me, the first step in transferring me. Suddenly, a remote for the bed I am in Tylenol, water, and chapstick I’d been waiting hours for are now available to me. The nurse asks what we’re doing. I ask the nurse, who is waiting on approval from the doctor for each of my requests, if my friends transferring me reduces her liability. She says no. I say pretend I didn’t say that then. Realizing we’re going to do it anyway, the nurses come in and put me in my chair. It is relief to institutional abuse. 

Medical settings are made for dealing with and erasing disability, but are never prepared for it. Staff are touted as heroes for managing the people no one else wants to, but don’t have the resources to properly do so. This is the latest in a line of my medical trauma. Trauma that runs as deep as early 2000s x-ray rooms I can barely remember in the Children’s Hospital where I was born and received much of my pediatric “care” in Omaha, Nebraska. This was neither my best nor worst medical experience. My medical and care chaos is normal Crip stuff. While my needs are high, they’re balanced with access to some care, insurance, social capital, family support, racial and class privilege, etc. None of these systemic problems are new – ableism is foundational to medicine. 

And yet there was a time when things seemed to be getting better for some people. Under Obama, I had a political coming up in disability rights and justice movements with Crips that would tout our “lives worth living.” I even got roped into a Not Dead Yet action once where we used our wheelchairs to trap eugenicist doctors in an Embassy Suites. Conversations about Crip death were slippery slopes. These days, I have as many friends who want to be dead as I do friends who want to be alive. The hospital reminds me why. Pain and mistreatment makes it hard to have perspective around possibility. Much of this seemed to begin when disabled people, and other marginalized groups like service workers and BIPOC communities, were made the collateral damage of the pandemic. Collapsing home care and health care systems on top of this make living hard, while tens of billions of dollars are sent to Israel to carry out atrocities. I’ve been afloat since I got a vaccine and a cat, but some days I get not wanting be here. Most days I just want everyone to survive. Throughout my 20s, I’ve learned to look people who taught me how to be a political Crip in the eyes and say, sometimes through tears, “I can’t do this without you.” 

“I’m so glad you’re here.” 

“We need you. Let’s stay and fight.” 

I know when the time comes, I will do whatever I can to help them die in their homes with dignity, not in an institution. It’s Crip code. Never in their own shit, call button unanswered. I will learn to say, “Thank you for all you’ve done.” 

“Thank you for staying as long as you did.” 

It’s not mine to determine, but I don’t think it’s time yet. I know that, like everyone, eventually my time will come too. Crips have a lot of pride but we also have a lot of experience with and proximity to death. I know I would not last long in conditions like those the U.S. and Israel are subjecting millions of Palestinians to, or in a climate induced crisis here. When my youngest care worker (who saved me up above) pitches building animal bladder pressure relief beds if war and climate ruin our electric systems (look what we have done to the brains of young people, y’all!), I tell them they will have to leave me and save the world. 

But these futures are still ours to write. 

Whether genocide is occuring in Gaza is not an argument I will entertain (do y’all hear yourselves??). The obvious relationships between Palestine and disability have been well documented (see here and here). At times, Americans die of COVID at a weekly rate of death that occurs over 2-3 days in Gaza. Facism builds on itself. Cop cities. Anti-trans legislation. Overturning of abortion. Freeing us all begins with freeing Palestine. When they come to save me in the hospital, my friend tells me about the first of growing faculty support for college protests for Palestine, including groups forming a circle around their students, holding hands, protecting them, and getting arrested. I cry. I say, “That’s really good news.” Encampments across the country form as I recover at home. Northwestern University is one of them. I wonder what ties my medical care has to genocides. A sign in my room said that Northwestern was an institution of health and healing. Abuse and intimidation will not be tolerated.     

Right before my surgery, another care worker sent me a Tik Tok about breaking small rules so we can learn to break big ones. Of course, everyone’s positionality and experience informs their ability to take risks. I am grateful for the Crip practice in this. 

I am not leaving unless. 

I am leaving against medical advice unless. 

I’ll be happy to talk to you about those risks once you put me in my wheelchair. 

People pleasing as a survival mechanism has its ends. If you grew up othered, it can be hard to mark yourself other. But what if we leaned into the ways that we already are? What if we dealt with our shit so we could deal honestly with the world? What rules - big and small - can you break for Palestine? Like the students and faculty across the country, the bay area organizers who blocked the bridge and threw their car keys in the water, bus drivers that refused to support a pro-Israel protest in Detroit, global movements of port and transport workers refusing to handle or move weapons heading to Israel, the countless people who have lost or left their jobs. These are just some examples. 

Like the actions of the students in encampments, our actions for Palestine will likely continue to be met with much support and resistance. Like many other schools, my alma mater, DePaul University, ordered police to brutalize its own students and destroy their encampment rather than divesting from companies that support Israel’s ongoing genocide of Palestinians. I am reminded of something my former professor, H Rakes, taught me at a 2014 divestment action there:

There are more of us. 

You are allowed to take care of yourself AND collective care is going to get us so much farther. A lot of brave people are risking their futures AND all of our futures are at risk if we continue to normalize mass death. We did not individually do this AND we cannot allow it to continue. 

The world is burning. Break all the rules. For the love of god, put on a mask. Shave your head, tell your crush you're crushing, look at people longer, kiss each other on the forehead, laugh, sing, dance, cry, grieve, be grateful to be together, clasp hands, link arms, and do whatever you can to stop this. We do not have to accept any of it.   

This piece was written by our founder, Kennedy Dawson Healy. Read more about her on our team page.