Disability Activists With Chronic Conditions: Alone In The (Political) Wilderness

10/31/2017 02:13 pm ET Updated Oct 31, 2017

As many people know, I identify as both disabled and chronically ill with chronic pain. When I first found the disability community, I was thrilled to find a world of advocacy where I fit, where I found like-minded people who cared about the same issues as I do. My place in disability advocacy has led to opportunities I couldn’t even dream of. Every day, I get to wake up and go to work on issues that I care about. Although many of the policies and changes I advocate for may never affect me, such as the use of new technologies for blind and low-vision voters, or improving emergency response for people with disabilities affected by hurricanes, I’m thrilled that I get to partake in advocacy that advances our community as a whole. Advocacy isn’t about individual benefit; it’s about achieving advances for your community regardless of whether those changes affect you.

As much as I love the disability advocacy community, I have become increasingly disillusioned by something in the past year, something I knew existed but has seemingly gotten stronger since the change in administration: people with chronic conditions are being erased or excluded from disability advocacy issues. Furthermore, issues that primarily affect people with chronic illness are being ignored by the larger disability community. I care about the disability advocacy community, and I’m trying to educate more people with chronic illnesses to identify as disabled and care as well, but more and more frequently I feel like that care is a one-way street.

Although we do have more medicalized conditions, people with chronic conditions are people with disabilities. Some of our concerns and priorities overlap with those of other subsets of the disability community, while other concerns and goals may be more unique to our experiences and needs. An example of the overlap: the frequent attempts to repeal the Affordable Care Act would have a massive negative impact on people with chronic illness, bringing back discrimination against people with pre-existing conditions and lifetime coverage caps that easily could cut off access to lifesaving medical care at an early age. As someone who takes medications that cost tens of thousands of dollars and who has had hospital stays that have cost over $300,000, I easily could reach a coverage cap at a young age.

However, while this was a big issue for many with chronic illness, it was rarely mentioned by disability organizations in their work on protecting the ACA. The disability community focused almost solely on the need to protect Medicaid because it enables people with disabilities to live in the community and receive community-based services and supports, and that is absolutely critical to the independence of people with disabilities. Protecting Medicaid was a major and necessary goal of all the protests and advocacy being done to protect the ACA.

However, among pages and pages of statements issued throughout the summer, many disability organizations didn’t mention the impact of the ACA repeal beyond Medicaid. While I agree with framing Medicaid as the primary issue for the disability community, it was really disappointing to see no mention of any other negative effects of the repeal on people with disabilities. Even just a sentence or two near the end of a press release or article would’ve sufficed to remind readers that people with chronic illness are part of the disability community and could be affected by insurance caps, but that didn’t happen. Many of us with chronic illness felt excluded and felt like the potential impact of repeal on our lives didn’t matter to other disability organizations.

More recently, I have been frustrated and hurt by the disability community’s silence on the War on Opioids. Democratic and Republican lawmakers are coming together to find solutions to stop the epidemic, making this a rare issue that may get cooperation in a very divided Congress. However, that cooperation is leading to policy decisions that will cause a massive, negative impact on the quality of life of people with chronic pain. Both government and private organizations are trying to reduce access to narcotics by limiting prescriptions of opioids to patients, even though 75 percent of prescription opioid abuse originates with people to whom opioid medication is not prescribed. Most people who struggle with addiction are not those who are getting a prescription from a doctor. Instead, these people get prescriptions by getting them from a dealer, or taking them from family of friends. Additionally, only 8 to 12 percent of people taking opioid painkillers for chronic pain end up developing addiction. Even the Centers for Disease Control have admitted that the opioid epidemic is being driven by illicit synthetic fentanyl, not prescription painkillers prescribed in doctors’ offices.

Despite these statistics, the government and medical institutions are trying to limit prescription of opioids to patients who need them to reduce addiction. As I have written about previously, CVS has limited prescriptions for opioid painkillers for acute pain to seven days, and the state of Ohio has adopted a similar policy. Unfortunately, there is no clear division between pain that is acute or chronic, and many people with chronic pain conditions may get prescriptions only for acute treatment. Many of us live in fear that we will not be able to obtain medications that are necessary to our quality of life due to decreasing willingness from doctors to continue treatments and new regulations that restrict pain management, and this fear is actually leading to suicides among people who have had their access to pain management rapidly cut off by their doctors. Facing a life of pain with little or no support from doctors, disabled people with chronic pain are choosing to take their own lives rather than suffer.

Despite the massive impact these new regulations have on people with chronic pain, there seems to be no outcry or acknowledgement from most of the disability community. Although individual activists furiously try to raise awareness of how these policies will impact us, it seems like nobody is listening, or nobody cares. Access to pain management enables so many of us to function: to get out of bed, to go to our jobs or our hobbies, to show up in advocacy and at protests to fight for the rights of our community, or even to simply get out of bed and get through our days with a manageable level of pain. We need help and solidarity in fighting policies from the War on Opioids that will make life filled with suffering for chronic pain patients. Sadly, all we have heard is the voices of fellow chronic pain advocates, and silence from disability organizations, as opposed to solidarity.

I don’t know how to end this piece on a positive note. I’m exhausted and upset from feeling like people with chronic illnesses are not wanted in disability advocacy, and when we are, it’s only if we show up for others with no expectations of solidarity for issues that disproportionately affect us. I’m not going to stop showing up for issues that are important to the larger disability community, and for issues that don’t affect me―after all, advocacy isn’t about what you get for yourself, but for the greater good. But the chronic illness community desperately needs solidarity from other disability activists when we are under attack. We can’t fight this fight alone, especially when it threatens our quality of life and our very ability to live.

Please, cross-disability community, make room for and show solidarity with people with chronic illness or pain. We’re here for you. I just wish you were here for us, too.

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