"She Said What?"

* This will be a potentially triggering post as it covers Covid, disabilities, and medical trauma. It is not meant to come from a trauma-informed perspective but to be shared as a full expression of my humanity and personal truths. Also, I chose the above image because it so closely resembles how I've felt, leaning over the side of my couch with my blanket, on days I've felt overwhelmed and in shut-down mode. *

On January 7th the CDC Director stated, and I quote:

"The overwhelming number of deaths, over 75%, occurred in people who had at least 4 comorbidities. So really these are people who were unwell to begin with and yes, really encouraging news in the context of Omicron."

Watch it here.

I don't know how clearer I need to be about this, and this time it didn't come from me. This was straight from the director of the CDC.

As a disabled woman with a compromised immune system, I am angry. I am sick and tired of people going on and on about freedom, getting "back to normal" and perseverance, when the freedoms of disabled people have been so limited, I've been in the house for a year and nine months, and our healthcare workers are crying in hallways and breaking down mid-shift in their cars because they cannot keep going, and taking on overtime.

As my governor touts that we have reserve capacity, more and more healthcare workers, and our economy sustaining workforce are calling in sick.

Capacity is also internal and this is about more than hospital beds. Our healthcare workers are only human. I'd love to come rallying back from this but we will need time as a nation, as a world, to heal from this, and our workforce needs to know we care about them, too.

If we don't make some changes whether we want to or not, the healthcare system will not be able to take on something more insidious. We don't have the resources for any kind of terrorist attack. Our emergency and fire personnel are down too.

This is bigger than us. Can we please stop pretending? I know it may be a coping mechanism, but we need to face this.

We need to talk about it.

I talk about ableism, discrimination, and Covid even when people say "I don't want to hear it, I'm sick of it."

I want to be honest here and say that I can only speak on these things to the extent of my experience as a white disabled woman, and my voice, thoughts, and opinions are mine. I do not speak for the entire disabled population.

I do try to raise awareness where I can, and I do want to point out that Covid deaths and infection rates have impacted black folks and their communities at an alarmingly disproportionate rate and that the black disabled population faces adversity, discrimination, trauma, and disparities across the board on a level that I do not.

***

Imagine how sickening it is to live in a world where a person we are supposed to have some level of faith in has the gall to say that it's encouraging that your population is dying, or how it would feel perhaps to hear someone say to you, "well, they had health problems and were going to die anyway."

I hope no one thinks that about me. Maybe they will.

Ehh, she was gonna die anyway, her life expectancy was only 58.

I feel dismissed and devalued. I know I am not the only disabled person feeling this way. It feels like my death, my existence as a disabled woman is just supposed to blow over like an afternoon pop-up storm, and then life will go on for everyone else.

Before you tell me not to think like that, perhaps consider all of the things being posted on the internet and shared at family dinner tables that send the underlying message to disabled folks and parents with disabled or medically fragile kids that they don't matter or that their comfort, their life, what they can have of it, should be sacrificed for the comfort and freedoms of others, and that no one has a responsibility to actually care whether they live or die.

When you or a loved one has been in the hospital for a serious illness or incident, do you not hope or have some level of expectation that people will do their best to help you or your loved one feel better, or survive a surgery, illness, or accident because the doctor did everything he could, and with great care?

Responsibility does have a role.

Long Covid is welcoming a lot of previously able-bodied, healthy people into our disabled world. Disability and medical fragility can happen to anyone at any given time.

The value of human life should not matter until it happens to you or you have to have a wake-up call. Perhaps finding yourself like I did, on my deathbed from the Swine Flu in 2009 when I should have done things differently. The doctors told me to stay home, but I went to a Halloween Party instead, kissed a few guys, and got gravely ill.

I don't stay home because "I live in fear."

I don't want to find myself in the same position with this pandemic because I should have been home. I don't want to die with the same feeling I had in my heart last time. I remember how I felt, clinging to life. I received my Last Rites during that time. If Covid is what takes me I want my time and last thoughts to be of my loved ones, not how angry I am at myself that I let my guard down.

My Complex PTSD already causes me to have unhealthy levels of guilt, and it's hard not to beat myself up some days over the could've's, and should've's, like the actions that led to my previous pandemic experience.

Just before Covid hit the United States, the emotional and body-based flashbacks from my 2009 Pandemic trauma came on hard. I had not unpacked it with a therapist previously and now, because trauma is also stored in the body, this pandemic experience has been layered, more traumatic, and hard to cope with.

I'm not scared of the virus. I'm scared of the people out there who just don't care. I was not prepared, as an emotional human to experience people's cavalier attitudes around the value of human life. I never thought I would hear anyone say things like "It's not my responsibility to make sure your grandpa doesn't die."

I have been home in my house for 654 days. It would be a few more but I've made three trips to my primary care and two trips to get my vaccines.

I would never say that someone's life mattered less than my own. Even if we disagree, your life matters to me, too.

I am sorry if this makes you uncomfortable. I don't speak about these things to make people mad. I am allowed to be angry. I have to get it out of me. I need to express my emotions and allow myself to take up space and have a voice because my life does matter. #mydisabledlifeisworthy