VIEW: Why disability justice is worth fighting for

Shain Neumeier is an attorney and activist, a proud member of the disability and LGBTQ+ communities, and a passionate advocate for disability justice. In this interview, they share why disability justice is worth fighting for, the challenges society needs to overcome to achieve disability justice, and the importance of not mistaking disability justice for disability rights and ensuring it leads to fundamental changes across society.

  • What are common misconceptions around disability justice that you experience on a day-to-day basis?

It’s not that there are misconceptions about disability justice so much as it is that people don’t know what it is at all. As is, people are rarely familiar with anything close to the full scope of disability rights – people might have heard of the Americans with Disabilities Act, or be generally aware that buildings are supposed to have wheelchair ramps, or have some sense of what special education services their children or students are entitled to, but beyond that it’s mostly us disabled people and professional advocates who even know what the law entitles us to. 

Disability justice, which would require even broader systemic changes up to and including completely remaking many societal institutions and norms, hasn’t yet entered into the wider cultural consciousness. My concern is that it could be co-opted by organizations and advocates who have no interest in making such fundamental changes, and who would have it become synonymous with disability rights.

  • How do you use your expertise and profession to address this?

The challenge with legal advocacy for the purpose of disability justice is that it lends itself to a rights-based model. As an individual attorney, I can hold the belief that certain practices or systems (such as coercive treatment in psychiatric facilities) should not exist, or that others (such as K-12 education) ought to be completely remade toward different aims and using a different approach, but there are limited opportunities for me to achieve outcomes that reflect those beliefs. Certain kinds of legal and policy advocacy such as class action litigation or urging legislatures to pass certain laws can make significant and worthwhile change to existing systems, but they generally don’t call the legitimacy of those systems themselves – or the underlying frameworks and beliefs – into question.

There are small ways to practice and demonstrate disability justice in the law – for instance, highlighting the context in which a person is struggling, and the systemic conditions that have created it, to change the narrative and therefore the outcome of a case. How a person talks with the client – presuming their competence, for example, regardless of diagnosis or initial presentation – can also reflect a disability justice approach. But if anything, these approaches become less effective by calling attention to them or naming them as part of a belief system.

Talking about disability justice as such is more effective in the context of community organizing discussions, both about disability issues specifically and about larger social justice movements where disability might otherwise not be considered. The key is to make disability justice an inextricable part of the work that other advocates are already doing toward economic justice, racial justice, queer liberation, or anything else, and vice versa.

  • What more can political and business leaders be doing to enable disability justice?

Few if any of us in the disabled community have volunteered in any meaningful sense to be sacrificed for political expedience or profit, and our lack of buying power or clout doesn’t make any of us expendable. Policymakers and business leaders need to be aware of the power they have to affect the lives of disabled people, and communities of people more likely to be or to become disabled, and treat that with all the weight that they would if it were their own survival and basic well-being at stake. 

The disability justice framework would require them to apply that to everything from workplace culture to public and employment benefits to preventing mass shootings to environmental conditions, knowing that disabled people will in many cases be both among the first communities to be affected by a crisis and the ones that experience the most effects overall.

  • During COVID-19, have you seen a change to how people with disabilities are viewed, supported, or treated in communities?

We’re seeing a return of more overt forms of social Darwinism because of the pandemic. Medical rationing policies on the parts of states or healthcare providers is one particularly egregious example, though thankfully disability advocates have been vocal enough in opposing them to put a stop to them (at least in theory) in some circumstances. I’m most disturbed, though, by how right-wing policymakers, pundits and protesters have been advocating for ending quarantine while explicitly acknowledging that many elderly and disabled people will die – with one going so far as to hold a sign that straight-up read, “Sacrifice the weak.” Their relative success in forcing states to reopen despite all the warnings from public health officials about the potential human cost will disproportionately affect disabled people, especially while rationing policies (official or otherwise) will continue to put us at the bottom of the list for COVID-19 treatment.

  • How have your personal experiences impacted the way you fight for disability justice today?

My experiences with involuntary medical and mental health care as a child led me to focus on these and related issues in particular. Just as importantly, though, the ways in which many, generally non-disabled authority figures abused their power against the disabled children in their care, and failed to use it to our benefit when we needed an advocate, made me want to become the type of person who would have done better by me and my disabled friends. 

Becoming part of the disabled activist community in adulthood gave me direction in this by showing me what the broader issues were – both those that had affected me and people I knew and those that I hadn’t been remotely aware of. The support I’ve received from other disabled people throughout my life – many of whom have struggled as much or more than I have – is there to remind me that what I and others envision is more than possible, and that it’s worth fighting for.

About the expert

Shain Neumeier is a lawyer, activist, and community organizer, as well as an out and proud member of the disabled and queer communities. Their passion on the issue of ending abuse and neglect of youth with disabilities in schools and treatment facilities stems from their own experiences with involuntary medical treatment and bullying, and led them to go to law school. They have pursued their goal of using legal advocacy to address these problems ever since. Shain’s work appears in Autistic Activism and the Neurodiversity Movement: Stories from the Frontlines, Resistance and Hope: Crip Wisdom for the People, Rewire News, and Loud Hands: Autistic People, Speaking. Among other honors, they were named the Massachusetts Bar Association’s Outstanding Young Lawyer in 2018, the Self Advocacy Association of New York State’s Self Advocate of the Year in 2017, and the Association of University Centers on Disabilities’ Leadership in Advocacy Awardee in 2015. When not working, they’re probably crafting, playing Dungeons & Dragons, listening to history podcasts, or watching Netflix with their partner and three feline roommates.

Image description: Headshot from the shoulders up of a Caucasian person with short light brown hair wearing glasses and smiling looking at the camera. They are wearing a collared white shirt underneath a bright blue v-neck sweater and a black blazer.