A Letter to My Abled Friends

the sick bed

A letter to my abled friends,

These are strange and difficult times for so very many of us right now as we experience collectively a global pandemic that changes the way we live our lives and experience the intimacies of our day to day realities as well as our basic assumptions over safety and security as we wrestle with lack of control in the presence of so much unknown. And by us I mean both abled and disabled humans, this far reaching experience where we are a collective “we.” Many of us are living in isolation, staying at home and having limited contact with others in person; many are losing work at rapid rates because of this.

And, there are also distinct differences between my experience as a chronically ill disabled person and the experience I witness you, my abled friends and fellow humans having in this current pandemic. The distinction is striking and it has made a difficult experience all the more painful and gutting, this layer of anger and sadness that gets stuck in my throat and makes it hard to connect.

Comparing suffering as if there is a hierarchy has never seemed that useful and usually only serves to make others defensive, and that is not what I want to create here. I am not diminishing the hardship or challenges that anyone is facing now in this moment, as growing numbers become sick without needed care, nor am I claiming that I can know the particulars of your own unique situation and what it is like day in and day out in your own lived experience. What I do want to offer is a window into what the experience is like for me, as a chronically ill disabled person living in the time of COVID-19. My hope is that in doing so, there is the possibility of acknowledging and reckoning with the ableism that has permeated our entire way of doing and being, and that we begin to work together to re-imagine and create new ways that do not leave anyone behind.

I cannot speak for all disabled or chronically people, but I will speak for myself, and say that these have been my own experiences and I do not believe I am alone in them. They speak to the experience of ableism that permeates everything, including the internalized ableism I have in my own self.

1. Watching the quickness with which forms of accessibility I have desperately needed suddenly become available once abled folx need them, such as the ability to work remotely and support to do so without being penalized, and feeling a sense of sadness and frustration that it can be that easy, which means abled people are valued more.
2. Feeling confused as suddenly all this mutual aid and support systems crop up and everyone is all about caring for each other now, even though this is what I have needed for a long long time, and no one was interested or seemed to care, because it didn’t affect them, so it was just us ill and disabled people supporting one another with so few resources while you all went about your lives oblivious and not listening.
3. Watching forms suddenly be quite easy to fill out and there is so much less paperwork to get aid, and there is all kinds of government aid available, while for years I have supported those who have have needed disability aid which has required a grueling and dehumanizing process of having to prove your right to exist only to be given less than is possible with which to live.
4. Watching as suddenly there are concerts available to watch online for free, and museums have galleries you can tour online for free, and there are countless educational resources available online for free, and people giving lessons for free online, and the very things that would have been so lovely to have for these past years while I lived at home in bed, but were not available because it only seemed to matter when abled folx had to be at home, and it hurts and feels like being told we didn’t matter.
5. Hearing abled people talk about being quarantined at home as the worst possible experience and how they will not make it through the isolation and their life has no value if they are not in the world, which is a valid experience, and yet they are only weeks in, and for some of us, this is our whole life all the time, and it is very hard to not hear that as saying that our lives then have no value even when this is experience turns into something else and you all get to go back outside and return to the world.
6. Seeing some of you learn that “staying at home all day” is not a vacation and sensing you didn’t understand or believe us before. It is not a vacation when your child is here, when you do not have work and enough money, when you do not have access to the food you want or need, when you are afraid for your own health. Now if you add being a lot of physical pain to that, without the shared collective experience and support, this is the lived experience I have known for a long time. And all the sentiments that if we really wanted things to be better or different, if we just “tried harder” we could overcome, reveal themselves to be the hoax that they are.
7. Reading again and again that “we are all in this together.” Except, when disabled, fat and old people are being told they will not be saved, saying we are “all in this together” is hurtful and untrue and a kind of gaslighting. It reveals, very quickly, who your “we” and “all” really is. who it includes and who is left out.
8. Hearing people talk about how lonely they are, which I so completely believe, and also wonder if they have ever considered what it is like to be chronically ill and disabled and not get to leave home very much if ever, and live almost your whole life this way, except in addition to the lonely and at home you are also in so much pain so you are in a really bad mood and no one really wants to be around you.
9. Seeing people on Instagram in their big homes with pools all together with their loved ones and stocked refrigerators and using this as a way to spend more time with their family, and knowing that whatever shared fears and struggle we have, experiencing this while living alone and in severe physical pain without access to doctors and the treatments you need because of what is now happening, is an entirely different situation, and the gap between seems to grow daily.
10. Being so anxious as people are not take things seriously and in their entitlement think they can go about “business as usual” even as it puts me at greater risk, and knowing that this means my life is expendable, which the hospitals have already communicated very clearly. There are no words for the panic of this.
11. Watching people quarantine and still get to work out at home and learn new hobbies and have capacity I do not and that being somehow the standard and they are the voices leading and taking up all the space, and the feelings of erasure, when disability wisdom might be needed more than ever right now.
12. Being afraid I will not be able to get the medication I need.
13. My own pain levels flaring and new symptoms developing and not being able to see my doctors because hospitals won’t see people right now.

Watching abled people respond to this crisis now makes me realize they either never believed me before or either did not care. Now that it is them, they have all the urgency in the world. Now that it is them, resources and access is suddenly available. Now that it is them, things matter. Now that it is them, they want to know, and they find it important.

None of us know what is going to unfold here, how long this way of life is going to last or what it looks like on the other side. It is an unknown. What I do know, is that many of you will return to certain aspects of your life before. It may not be the life of before, but there will likely be a sense of returning to activities you once enjoyed, and going back to work, and life will shift and find its way into something new. And what I really truly hope, is that in this, you do not forget that there are those of us who will not be joining you. I will still be mostly at home. I will be in my sick bed, still working and spending hours and hours of my life at home, in bed. I will still be sick and still be afraid of getting sicker. I will still be disabled. I will still need accessibility for so much of life to be livable. And I hope that you do not forget me and those like me, when you leave your homes. I hope those things you found valuable when it was you, remain valuable when it is no longer just for you. I hope you do not forget the wisdom of these times.

There is wisdom here in my disabled body and brain. There is wisdom from the sick bed. Slowing down, opting out, saying no, resting as a right and not a luxury: these things are all a form of a resistance and defiance and reclamation and love. To listen to the voices of those most impacted. To believe them. To know the human self as worthy whether or not it produces a single thing is a triumph really, and one that takes a lifetime of deprogramming given the systems of oppression entrenched in this psyche and lived experience of mine. It is worth it I think, to give myself to this, this work of a lifetime. Come join me.

In love and defiance,
Isabel