From the sidelines
Content warning: suicide, medical trauma, eviction
This July marks the third anniversary of Erin Gilmer’s death. Erin was a lawyer and disability rights advocate who was active in online disabled communities. She lived with multiple illnesses, several of which manifested as chronic pain. On her blog and twitter, Erin wrote about many aspects of her experience including medical trauma, isolation, and inadequate pain management. Many of her followers, myself included, saw our experiences reflected in Erin’s work.
An unintended consequence of tackling the opioid crisis has been gatekeeping pain medication from disabled people who require aggressive interventions to treat chronic and often degenerative conditions. Disabled people are often left to navigate pain, facing suspicion rather than support when engaging medical professionals for help. In one of her final posts on twitter, Erin wrote, “The pain is more than anything I’ve endured before and I’ve already been through too much. Yet because it’s not simply identified no one believes it’s as bad as it is. This is not survivable.” Erin died by suicide later that day.
Three years after losing Erin Gilmer, we lost another community member. Also named Erin, also disabled and isolated. Erin O’Neil was a disabled woman living in Ottawa. As a person who relied on the Ontario Disability Support Program, Erin received $1,368 per month to cover all of her expenses, including rent. Unsurprisingly, in a city with skyrocketing rent and few supports, Erin lived in inadequate housing. Despite her steadfast advocacy and continuous requests for help from organizations and officials, Erin was left without adequate support. As a result, she was served with an eviction notice informing her that she needed to vacate her home by July 23. Erin O’Neil died by suicide this week.
In a different world, the death of Erin Gilmer would have resulted in changes to medical standards. It would have led to improved pain management protocols and greater compassion from medical professionals working with disabled patients. In a different world, the death of Erin O’Neil would lead to new legislation, Erin’s Law, that would prevent disabled people from being evicted because of their lack of financial resources or for any challenges relating to their disabilities. People would be housed in appropriate, supportive and dignified housing, recognizing that housing is a human right and not an award for upstanding citizens. ODSP would be overhauled, properly staffed, and fully funded. We would build community spaces to foster connections for disabled and otherwise marginalized people to connect, socialize, and find support. But that’s not the world we live in. Erin O’Neil’s death, while grieved deeply by those who knew her and the disability community at large, is just a blip to policymakers and politicians.
It felt particularly painful to lose both of these people in July, which is recognized as Disability Pride Month. Since the start of the pandemic, each July has felt like less of a celebration and more of a gasping moment to take stock of how bleak life has become for disabled folks. Author and activist Alice Wong has suggested that July should be redesignated as Disabled Rage Month and it certainly feels more fitting. Not just because of these losses, but because of the context in which they take place – as the list of proposed mask bans in the United States grows, as the media and politicians downplay the severity of the ongoing pandemic, and as we are relegated to the category of the disposable other.
When people say that COVID only impacts the medically vulnerable, they are talking about me and millions of people like me. They are saying that our suffering and possible death are worthwhile gambles, not deserving of simple protections like vaccinations and masking. How can this be a month for pride when we’ve been indefinitely sidelined from public life?
There is a direct link between the disinterest in protecting disabled people from COVID to the medical barriers that Erin Gilmer (and so many others) faced and the bureaucratic violence and systematically enforced scarcity that Erin O’Neil (and so many others) faced. As disabled people, we are seen as less: less trustworthy, less important, less human.
To be disabled is to know rage, grief, and incredible precarity. To be disabled is to understand that mutual aid and community care are central to survival. To be disabled is to be able to imagine better, more equitable futures while locked out of participating fully in a society that has discarded you. To be disabled is to say goodbye to friends too soon, and to see your own possible future in their struggle because you exist in a world that offers you little support. To be disabled is to wait for the world to catch up to your vision of equity and to be uncertain that they will arrive in time.
We are too late for Erin and Erin. But it is not too late to stop the inhumanity of the systems that killed them. Mourn the dead and fight like hell for the living.