Michigan Disability Resistance

A group backed by billionaire philanthropist George Soros has launched an effort for Maine to be the first state to ensure all elderly and disabled people have access to help with daily activities from bathing to medication management.

The proposed ballot question would increase taxes on high-earning Mainers in order to raise $310 million annually to provide such care, which would include home health aides, home repair, hospice care and transportation.

There is appetite in Maine to make the wealthy contribute more as income inequality grows nationwide, said Mike Tipping, spokesman for the liberal nonprofit Maine People’s Alliance.

“It makes a lot more sense to help people age in their home rather than ship them off to a nursing home,” he said.

The group’s campaign this month reported receiving a $350,000 boost from the Washington, D.C.-based Center for Community Change Action and the Open Society Policy Center, also based in D.C., a nonprofit funded by Soros, who has long railed against income inequality. The Center for Community Change Action reported that the $150,000 it contributed to Maine’s effort came from the nonprofit linked to Soros.

On Thursday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide – please consider signing up to be a vigil site coordinator. 

In the past five years, over 550 people with disabilities have been murdered by their parents, relatives or caregivers, and in the year since our last vigil, our community has lost over 100 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. The criminal justice system has continued to give lighter sentences to parents and caregivers who murder disabled children. And we have seen both news and entertainment media continue to portray these murders in a sympathetic light. 

We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities. This would not be possible without the vital work of our volunteer site coordinators. Click here to learn about what site coordinators do, or to sign up to lead a vigil. 

Since 2012, ASAN, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, the American Association of People with Disabilities, and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. We’ll be at our local vigils on Thursday, March 1st – and we hope to see you there. 

Recently a date asked me, “When did you become politically disabled?”

This is a good question. I like this question more than the seemingly endless stream of microaggressions people insist are “well-meaning.” What happened to you? and But you’re so young! These questions remind me of the forms, of the bureaucracy, of the plans I had for after I was twenty that got derailed by being “permanently and totally disabled” and an “adult disabled child” which is the language of the state that I periodically have to apply to myself if I want things like health care and money for food.

Even after I had forms that stated I was “permanently and totally disabled”, there were times when I would not have used that word. I edged around it. It seemed like an abyss that I could not crawl out of. I hoped that maybe if I did not use that word, there would be some dreadful mistake (or better yet, a cure) and then all of this would go away. This world of doctors and “normal” blood tests even though I felt like a ghost trapped between realms.

Somewhere, though, I stopped seeing myself as The Only Ghost. I stopped seeing being disabled as the worst thing ever. I stopped waiting to be able to find meaning in my life.

Don’t get me wrong. There is still an ongoing process of grief for the things I wanted to do but cannot. Sometimes because of institutional ableism, as per the social model of disability. Other times, though, because sitting upright to type at this laptop is harder now than it was when I was twenty. My hips hurt, my hand hurts, my brain fogs.

Fibromyalgia, I was told upon getting my first “physical” diagnosis, is not a degenerative condition. These days, it is the continued loss of things I have forged into my new identities that scare me.

Yet I am also more used to dealing with fear. Not because I’m particularly special or gifted, but because I have so much of it. Welcome to having an anxiety disorder and PTSD, and also laying awake thinking: What will happen if I lose my health care? What happens if this test comes back positive? What happens if it comes back negative, and we still have no real clue what is going on with my body?

On the second Tuesday in June, I start to feel fluish. If this is 2016 and I’m still a freelance writer, I’m losing money immediately on the assignments I can’t complete because my vision is blurry and my thoughts are erratic. If this is 2013, I am soon taken off the roster at the cafe where I work.

I am out of my mind with anxiety as I hobble to the clinic, sweating, and pay $60 for cough syrup, $300 for the 10-minute visit (if I even have that in the bank; it’s about a week’s worth of my earnings slinging coffee). Once I realize I can’t keep down the cough syrup and start spitting up bile, maybe I’m so feverish and broke I stay in bed without realizing the bacteria I’ve inhaled is more lethal than the flu. So perhaps I just up and die right there.

But let’s say I somehow make it to the hospital. A friend drives me, because a 15-minute ambulance ride can cost nearly $2,000, which I don’t have. I’m struggling financially and I’ve fallen behind on my ACA payments. My friend realizes in the car I’m not making any sense, and that’s because my organs have already begun to shut down. My temperature is well over 100. When the doctors can’t figure out what’s wrong, they submit me to a credit check before advanced treatment.

My credit is awful. I have a massive, unpaid bill from a few years back when someone made international calls on my stolen phone. Maybe, because of this, I’m transferred to a public hospital, where there aren’t 20-odd specialists to arrange an “unusual” surgery. Doctors are required to stabilize a patient, but they aren’t required to, say, stabilize a patient just long enough to keep them breathing and take them to another hospital with a full infectious disease wing to do something risky. So maybe that’s when I die, before they even figure out what’s wrong, because I’m not the type of patient whose financial health can support an elaborate, life-saving procedure.

If you’re reading this, you probably suffer from chronic pain.

There’s also a good chance your condition was preceded by some sort of trauma. The connection between chronic pain and PTSD is real. There’s now a small but growing body of research that links these two conditions.

Fibromyalgia and trauma is also a two way street. Even the mainstream medical community is beginning to recognize that one can feed the other. Not only can trauma cause pain. But living with pain can also lead to being traumatized, according to a study published in the medical journal Pain.

Is Fibromyalgia Secondary to PTSD?

The positive takeaway from this is that it helps us understand why we have pain, and what we can do about it. I totally reject the premise that chronic pain is something we have to live with, and that it’s permanent and, oftentimes, progressive.

That’s because I’ve personally healed from excruciating pain, which followed a series of traumatic events. I do need to point out that I’m not a doctor a licensed mental health professional. So everything you read here is just presented as information only.