My daughter has daily IV treatments that require the use of an infusion company, home nurse visits, and an endless amount of supplies for the care of her chest port. She struggles with “brain fog”- which is a form of cognitive impairment that many people with many forms of chronic illness experience. Therefore, I am responsible for dealing with a lot of the minute details of her care, while she focuses her entire energy and attention on coping with day-to-day symptoms and following complicated medication schedules.
Sounds complicated, but she is still one of the “lucky ones”. She can depend on me. She is still mentally and physically capable enough that she can live alone without requiring 24/7 care. She is white, educated, and I am willing (and able) to help her financially. I can act as her “secretary” and deal with insurance complications and be the middleman between doctors, nurses and pharmacists. Many people with chronic illness or mental illness, and those with physical or intellectual disabilities do not have the luxury of a “helper”, let alone a determined advocate. They are isolated and they are poor. They are continually ignored when well-meaning people talk about inequalities and social injustices.
The only reason my daughter has access to healthcare is because of the Affordable Care Act (“Obamacare”). Even so, her access to care is limited. We still pay out of pocket for some necessary pills. It is not a perfect system, but without it she would be on a track to a slow and painful death. I am not exaggerating for effect. Right now (for the first time in years), she has hope that she will get better. She has had some major gains this past year and with the access to treatment she has now, there is the very real possibility of healing from a disease and at the very least coping more effectively with the aspects of her illness which she may never fully recover from. [Also, don’t forget that it isn’t just people with disabilities who have benefitted from the Affordable Care act. Women in particular, we have a lot to lose if it is repealed! Source]
As much as I am frightened for my daughter and her future, I am also worried about those who face even scarier realities. It is terrifying that repealing the ACA will result in 20 million people losing their health insurance, and will result in the deaths of 43,000 people a year. And that is a conservative estimate! [source] My daughter and I are two people who care very much about helping others, but because of her illness, we are not in the position to do much more than talk about it to those who will listen. She is struggling with debilitating symptoms while I work a full time job and use every spare minute helping her.
So I ask that when you are expressing fear about the future, when you are posting facebook comments and re-tweeting celebrities who criticize the president, don’t forget to add “ableism” to your list of injustices. Stand up for every marginalized group and recognize that those most at risk within any of those communities are disabled.
“Disability transcends race, ethnicity, religion, socioeconomic status, sexual orientation, and gender identity.”
Be an ally. Start paying attention to (and listening to and learning from) people who are different than you- people of color, LGBTQ people, anyone with a different religion or even political affiliation and recognize that people with disabilities exist within each of these groups. Seek them out. Don’t let the echo chamber effect of your social media lull you into complacency or submission. Confront your own privilege and USE it to help! Use the mental energy and physical capabilities you have to fight for those who don’t!
“You shouldn’t have to be personally affected by something to care about it, but if helps, here’s a reminder: Every single one of you could become disabled or chronically ill at the drop of a hat”
Empathy matters. Read blogs, read real-life accounts of disability, read fiction about people with illness or disabilities (although, try to avoid the ones that conveniently gloss over the real struggles of living with illness- I’m talking about certain young adult romantic novels and movies that somehow make cancer seem glamorous). Please read and share articles and essays like the ones below. (I’ve even included some excerpts if you don’t have the time or energy to read them all!)
Links and Excerpts:
Repealing the Affordable Care Act will kill more than 43,000 people annually, David Himmelstein and Steffie Woolhandler
“The story is in the data: The biggest and most definitive study of what happens to death rates when Medicaid coverage is expanded, published in the New England Journal of Medicine, found that for every 455 people who gained coverage across several states, one life was saved per year. Applying that figure to even a conservative estimate of 20 million losing coverage in the event of an ACA repeal yields an estimate of 43,956 deaths annually.”
Disabled People Will Die Under Trump: An Emergency Plea To Allies, Carolyn Zaikowski
“There is nothing more privileged than being able to comfortably intellectualize and debate about a utopian future without having to worry about your physical or emotional survival in the present. Without having to wade through the resultant muck after systems of oppression pit your survival against your ethical purity.”
“So here we are. We have elected a textbook authoritarian. We are in uncharted waters, even for the USA. And right now, more than ever, if you are an ally, then you need to say the word “ableism.”…Look at the terrifying history of what other authoritarians have done to disabled people, then say “ableism” loudly, forcefully, whenever necessary, and mean it with all of your heart and mind. If you want to be an ally, if you want to stand in solidarity in any manner that could be considered feminist, intersectional, radical, or otherwise enlightened, it is required that you develop a sense of passionate injustice about ableism.”
“I don’t know how to say it more clearly. This is a literal emergency, as in: Actual emergency rooms will be overflowing. As in: Death and levels of physical and psychological suffering you cannot comprehend. As in: Disabled people don’t historically fare well under authoritarian governments.”
“You need to learn about things like invisible disabilities, the obstacles that keep disabled folks from voting, the internalized ableism that makes disabled people hate themselves, and disabled people’s remarkable resistance movements. You need to teach yourself and others about the horrifying history, both in the U.S. and abroad, of human societies’ various attempts to kill and stomp disabled people into the ground. You need to do all kinds of things I can’t think of right now because I have Ehlers-Danlos Syndrome and PTSD and the stress of this election is making me physically ill.
The bottom line: You need to act and be sneaky and crafty and smart and do the work. None of us can be free until all of us are free. So say “ableism” and mean it. We really, really need you.”
As A Disabled Woman, I Am Terrified By A Trump Presidency, Robyn Powell
“What happens to my friend who is transgendered and a wheelchair user? Or my friend who is a person of color and autistic? What about my friend who is Muslim and disabled? Or my friend who is also an immigrant?”
“As scary as it is to be a disabled woman during these times, I cannot even fathom what my brothers, sisters, and non-gender-conforming friends in the disability community who are multiply marginalized are experiencing. What does their future look like? Will they not only lack access to appropriate services and supports but also be unable to live safely, free from increased bigotry and hate?”
Repealing Obamacare Would Give A Tax Cut To Millionaires, Like Donald Trump, Jonathan Cohn
“More than 20 million Americans could lose health insurance from the repeal of Obamacare. But not everybody would suffer. And among those who stand to gain are the richest people in America.
That’s because Obamacare didn’t just change insurance arrangements. It also raised taxes on corporations and individuals. Repealing the law would mean repealing those taxes, with significant benefits going to millionaires and multimillionaires. President-elect Donald Trump might even be one of them.
When democrats sat down to craft what became the Affordable Care Act, they committed to creating a fiscally sound program- for every new dollar in government spending, they pledged, they would find at least one dollar of new revenue somewhere else. And democrats were good to their word.They wrote legislation that, according to the Congressional Budget Office, has actually resulted in net savings for the federal treasury.”
How to Easily be a White Ally to Marginalized Communities, Christopher Keelty
“proactively seek out voices you aren’t hearing from…The great thing is that once you start paying attention to people different from you, whether that’s people of color, LGBTQ people, Muslims, people with disabilities, Desi people, East Asians, etcetera, you will begin to encounter other new voices that you’ll appreciate. But you have to take that first step.”