Damn, you’ve been busy! It’s been one hell year for you. You’ve been working nonstop. And while I am so grateful, you exist and appreciate the work that you do I am beyond frustrated with you. You see, as a disabled woman of color who is always ready and willing to go to battle with you, to be lead by you, I am constantly reminded by your actions that you don’t see me, you don’t see people like me, and our struggle is constantly ignored by you. It’s funny because being seen is so important to you. It’s essential that the world recognize your humanity. So I ask you, friend, am I not human?
We are more alike than different! If you just took a second to breathe, to pause, and recognize that we are suffering alongside you, where would we be? We are battling for our existence too. Every piece of this system is constantly working to not only kill us but to erase us.
My friend, have you done your homework? Studied those who gave their lives in the name of change? Did you read the books written by and about those who created the foundation of community change? Historically we can pick many. But if I could just for a moment highlight a group, I’d ask you to take a look at the Black Panthers. They believed that in order to be truly liberated, we all must be liberated! All of us and anything short of that is a failure. So as you plan your next move, I urge you to think about your leadership and whose liberation is being discussed? Who’s liberation isn’t represented? How can you better unify and what are you missing?
And lastly, I ask how many more, how many protests, campaigns, speeches, parades, and marches are you going to orchestrate in the name of changing the world and daring society to be better while you ignore disabled bodies. Having an ASL interpreter available is not enough. Plan for us, include us, and recognize that we too can lead.
Being disabled might mean that we look different, but we are one!
“As a culture worker who belongs to an oppressed people, my job is to make revolution irresistible.” – Toni Cade Bambara,
Dear Irresistible Revolution,
My understanding of you is etched out of edges and angles, composed of changes and consequences, preserved in passion and patience, tethered to truth and transformation. Revolution, you cannot be evaded or erased. You live in the breath, blood and bones of every Black Indigenous Person Of Color with a disability. The mere thought of letting you go terrifies me throughout the night and the very idea of holding you eases my entry into each new morning.
To turn away from you is to turn away from everything within me. I am far more emotional because of you. Not just in relation to an emotional presence but in the sense of emotional transcendence. I have 1:00am conversations with Anger, 11:00am calls with Happiness, 3:00pm discussions with Fear, 3:10pm talks with Sadness, 5:00pm chats with Courage, 9:00pm debates with Worry and midnight moments with Love. Holding space for these emotions to exist holistically in my Black disabled body is a radical act of healing and daily dreaming. You have helped me to observe how dreams can grow in both daylight and shadow. You have held my hands as my fingers trace across the various shapes of my trauma. Some of that trauma is generational familiar to my mother, grandmother and great grandmother while other forms of that trauma are more acute known only to me and God. Thank you for being my Sentry as I search for safe spaces for both my mind and body to exist freely in a world that rotates atop an axis of ableism and anti-Blackness.
Revolution, you are with me always. In the predominantly white workplaces, in the businesses that fail to accommodate people with different types of disabilities, during disasters/emergencies, in classrooms and hospital rooms, you are always there. With every breath and each heartbeat, you live, I live, we live. Sometimes subtle and semi-silent but most times bold and profoundly rowdy when necessary. I derive so much pleasure from having you inside me, a feeling that is overwhelmingly organic and orgasmic. Thank you for this embodied knowingness especially when there are so many external unknowns beneath my feet and ahead of me. Just knowing you are here and that you will be there, somewhere in the future, is more than enough. You are my most well-known secret. They know you so they fear us. The joining of our collective power is a problem for those who have never resided within the margins. But you and I, we like to stretch out. We deserve space on every page. We are not asking for permission to show up because irrespective of whether or not they choose to see us, we are still here. We have a common love interest, liberation. We share a similar discipline, hope. We are mutual aid dance partners in movements. We are an ever-lasting entanglement. I could never live this life without you, my beautiful, beloved and irresistible revolution.
Dear Grief, during a time of COVID-19,
It’s been now more than a month since my brother died. My family and I have been struggling with losing our loved ones. The paused grieving process that so many people are experiencing as we wait for our families’ bodies to move out of storage freezers and into those spaces where we can find some sliver of solace. Like many others, I want to be able to do something that COVID-19 has forced us to wait for now or give up altogether.
My brother Eduardo Arturo was 34. He was Native American and Mexican. Two Spirits, and a person with a disability. He had been living with AIDS for over a decade. Our family would ask him to buy us a lottery ticket whenever we saw him because we all thought he was such a lucky person. When he developed AIDS, he had had several opportunistic severe illnesses that needed significant hospitalization and, on several occasions, life support. He would always recover, come out of the hospital filled with hope for the future.
The COVID-19 epidemic changed everything for all, especially for disabled folks who are at high risk of contracting and having the worst health outcomes, like my brother. In the first weeks of the state lockdown, I saw how people like my brother, in many ways, were left to fend for themselves. Many could not go to the store to buy food, either, because of the large shortages that came with people hoarding supplies. Others went without food because of the lack of public transportation and the limitations of waiting in line and carrying needed supplies back home. Unable to get necessary medical services, people like my brother began developing worse medical conditions. The clock started running out faster.
Here in Los Angeles, going to get services at doctors was a life risk activity for many. That is, if doctors were even available. Hospital visits became a type of COVID-19 roulette game because of the high exposure rate. Some hospitals would quickly discharge high-risk patients, and in some cases, they just started turning ambulances away. For those who would be admitted, the constant anxiety of exposure was real. It compounded, even more, the isolation that many hospital patients are experiencing because hospitals are not allowing visitors or support staff for disabled people, which forces so many to leave the hospital before they can get the necessary medical care they needed.
I saw my brother’s health go down quickly. In the first 8 months since the pandemic began, he had to go into the hospital over 7 times. Each time for complications that were more serious than the one before. He was terrified of going into the hospital, always waiting until the last minute before asking us to call 911. We have had several family members die alone of COVID-19 in the hospital, and for him, this was a real possibility.
To help with his medical needs, my family and I created a hospital at our home. I turned my bedroom into his care space to monitor him and make him comfortable. Because of the shortage of home nurses, I quickly had to learn to do his IV’s, CPR, and other things. I monitored the long list of medications needed to help him manage his AIDS and the many side effects.
I learned to be patient, not just with him but with myself. I had to learn to control my expressions so that he would not see the fear in my face when I would see how much his health was deteriorating. I had to learn to listen and just be there when he was not feeling well and was angry. I started writing, recording, and tapping all sorts of conversations with him because I knew he was running out of time.
Often when I would be taking a shower, I would just break out in tears. I was constantly checking on him to make sure that he was breathing. And my dreams were filled with constant anxiety. I would wake up feeling more tired than the day before. I had to seek help. I felt like my family was dying around me, and I could not protect them. I felt like my family and I were left all to ourselves to care for him. The isolation from the pandemic meant we were all together as this was happening, and we could not have others with us for support.
Now that my brother has moved on. I feel I am stuck in the space of grief, and it feels like madness. I tried asking for therapy help from my local department of mental health, but they could not help since they are in pandemic mode and there is a staff shortage.
I was able to get some help from my local Native American community clinic, which was able to find a therapy student that could offer me support. And once a week, I would find someplace for me in the house for one hour and check in on how I was doing.
COVID-19 has made folks skip birthdays, weddings, funerals. It’s something that we have had to give up for right now. I am deciding to hold on to my brother’s memory, not forget what has happened in this once in one hundred pandemic. For my family and me, grief has a place, a voice, and a right. The nights are confronted with warm stories about my brother. We go through pictures and memories that tell us irrefutable who he was for each of us- son, a brother, an uncle. When the ashes of his body come home when it’s all safe for all of us to come together again and remember those whom we lost in this pandemic. I will honor what he taught me in his final days and strive to be humble, compassionate, and grateful. And to buy one more lottery ticket, because that is hope.
Héctor M. Ramirez
Dear High School Guidance Counselor #2,
When I called you about 5 years after graduating, thank you for picking up. I was scared and said something like “I’m so tired that I’m afraid that if I was crossing the street and a bus was coming, I just wouldn’t get out of the way.”
And thank you for suggesting I go to the psych ward. You mentioned going in after a tragic event and enjoying the drugs they gave. I remember the honesty in your recollection, it fills me with love for you. So, I went. It was ok. As trans icon Miss Major would say “I’m still fucking here.”
But I didn’t take the drugs. I went in because I was exhausted from all the revelations re figuring out being multiple, more than one person in this body. I mentioned it to a psych nurse. She said, “don’t take anything they give you, in my experience nothing they can give you helps.” That honestly also left a big impression on me, on us. Enough to withstand tsks from the other nurses. I’ve taken some things since then but not much. I sometimes wonder if I should be taking more. And I’ve met a lot of other multiples who are taking different psych meds that they find beneficial. But anyway. Thank you. Thanks for picking up. You contributed to saving my life. I wasn’t a danger to myself, but I felt in so much danger and being in a place that was structured and safe for a week, even if it was stigmatizing in other ways, helped me.
One thing that SUCKED was I checked TWICE to see if they took my insurance, they said absolutely. Yet for a one week stay, I received a bill for $3,000. I called to inquire: what the fuck? “We take your insurance, but the resident psychiatrist did not.” WHAT A RACKET. The Psychiatrist. In the Psych ward. Who you have to talk to if you want to leave. Anyway, not your fault, just venting.
I really want to catch up sometime. I have had the urge a few times a year for a long time. So here [contact info] same number. I live in California now. But if you still live in DC, I’d really love to go to the zoo with you sometime when I’m back there.
I was so scared then! It’s hard to go back in time and reassure past selves that they made it over that steep trench of uncertainty. It’s ok. It’s ok. It’s gonna be ok. What I was experiencing then was kind of shock at realizing my own multiplicity, being many people in a body, and it’s now a pretty mundane and also wonderful aspect of my life, and all of us here in our body call ourselves [system name] and we get along really well, and we’ve done some activism and community-building to help and connect with others like us too and that’s been really nice. Will send you some links but morethanone.info is pretty good. Excited for you to meet everyone actually, because some of them remember high school which includes remembering you, too.
We have had a lot of good life since then. It’s hard to look at that time even 9 years later. So, I’m glad you picked up the phone and looked at it with me then. I think I need to spend more time with that year of my life.
We also identify as nonbinary, collectively. Please use they/them pronouns to refer to us, and don’t call us our old name. It’s ok if you make a mistake, I just want you to have time in advance to internalize the concepts a bit so when I need to correct you it’s not news.
Oh my god you must’ve hated the Trump era. We did too.
Sorry it’s been so long. But also, oppression sucks so I forgive myself. Heh.
Eliza et al.
Dear Approval Addict,
Checking in on you. How long have you spent this week hovering over an Instagram or Twitter post waiting for a like or retweet? How much time have you spent wishing it was you instead of [Current advocate/activist who has the spotlight of the moment?] who has the byline, or panel invite, or a twitter mention from some public figure the world swoons over?
Let me begin by saying, I FEEL YOU. Deeply. It’s likely you’ve spent much of your life aiming to collect a bucket full of “Yes! You’re amazings!” to validate your very existence. If you’re like me, you carry so many identities that even if you feel like you’ve received a stamp of approval in one space, you likely don’t feel the same in another. And now, if you’ve become connected in one manner or another to the disability community…well, here’s yet another group of people that you wanna win the hearts of.
Now, let me encourage you, as one who has learned the hard way: LET. THAT. ISH. GO. Easier said than done, I know. But, take it from the woman who used to sit with flashcards every night trying to remember the names of the “key players” in the community and all of the acronyms for everything disability-related just so she could fit in during work meetings and community gatherings -it ain’t worth it! These people are just that. PEOPLE. Decades from now, their approval of you will have had little or nothing to do with where you end up (unless you’re down with having these folx control your life, which I DO NOT recommend).
If you’re the type of approval addict who’s willing to take someone else’s authentic ideas and work and act like it’s your own…Or, perhaps you’re the crip who pulls from other social justice movements in the name of “comparison” to get sympathy (aka approval) from those who don’t know any better? We see you. We know you. And we’re exhausted from calling you out and trying to fix your mistakes. Two words for you: JUST. STOP.
Take a step or a roll back and ask yourself the one question that changed my life a few years ago: What do YOU want? Forget what everyone else is doing or saying. What do YOU want to say? What do YOU want to do? And what do you NOT want to do? Don’t feel obligated to co-sign or maneuver a certain way if you’re not totally sold on it. Go with what you desire to see manifested in your life. Write and/or document this. Reach out to people who you believe you can trust and ask if they can provide guidance. I can’t promise you a “yes” from everyone, but I imagine there’s at least ONE person available to guide you.
With all sincerity,
A Recovering Approval Addict