What led you to become involved in disability justice activism, and what does the term mean to you?
While growing up in Tampa and attending school at Duke, I developed several close friendships with people who had developmental disabilities. Through these relationships I began to understand the systemic limitations on opportunities and discrimination that people with disabilities confront. For example during my time at Duke, I participated in Best Buddies through which I made a life-long friend who spent many years of her young life in an institution and has spent most of her career working in a sheltered workshop for subminimum wage. Around the same time, I was exposed to the possibility of change through legal reform. During a summer internship in Washington DC, I had the opportunity to lobby for the Americans with Disabilities Act, ultimately passed in 1990. By graduation I was determined to use the law to improve the opportunities for and stop discrimination experienced by people with disabilities. Duke Public Policy Professor Bruce Payne wisely advised that I needed to work more closely with people with disabilities to more fully understand the issues before trying to become an advocate for them. I spent my year post graduation in Aspen, Colorado where I worked down valley in Glenwood Springs managing three residential apartments for nine people with developmental disabilities. I very quickly witnessed many of issues that still impact the community: criminalization of mental illness, financial abuse, lack of residential providers, de-sexualization of people with disabilities, forced sterilization, and warehousing of people with developmental disabilities in nursing facilities. With this knowledge, I headed off to law school to become a disability rights attorney.
As a disability rights attorney, I have used legal means to enforce rights, prevent abuse and neglect, improve conditions in institutions, increase access to more integrated settings, change perceptions around disability and decrease stigma, and improve accessibility in programs and services. Throughout most of my more than twenty years advocating, I worked within the disability rights movement, utilizing large impact litigation and education to affect systemic change.
However, as explained by Sins Invalid, at its core the disability rights movement is a single-issue identity focusing on disability, “center[ing] those who can achieve status, power and access through a legal or rights-based framework.”
( https://www.sinsinvalid.org/news-1/2020/6/16/what-is-disability-justice). Thus, my career has not been spent in disability justice, an intersectional movement or framework.
Most recently, I have strived towards a more intersectional approach recognizing that the root systems of oppression are connected and that those who are multiply marginalized are most impacted. I have strived to learn about and integrate Disability Justice into my advocacy. As explained by Sins Invalid, “[i]n 2005, disabled queers and activists of color began discussing a “second wave” of disability rights….. A critical aspect of disability justice is the “leadership of disabled people of color and of queer and gender non-conforming disabled people.” (https://www.sinsinvalid.org/news-1/2020/6/16/what-is-disability-justice).
What are some of the biggest barriers to disability justice that you've encountered in your advocacy work, and how do you suggest addressing them?
When utilizing a disability rights model of change, winning the case or obtaining a settlement is only the first step. Attorneys must stay vigilant to monitor implementation of the settlement provisions with enforcement of cases lasting decades. Regardless of the change that we are able to achieve through a legal rights model, the issues will continue because we operate in a system built on bias that is perpetually under-resourced. Too often lawmakers and public servants create laws and policies impacting people with disabilities without their input or involvement.
To achieve systemic change and address the root causes of oppression, change must be led by and directly involve the input of people with disabilities including those who identify as multiply marginalized.
What do you see as some of the most pressing issues facing the disability community today, both in terms of policy and cultural attitudes?
While much has changed since the passage of the Americans with Disabilities Act in 1990, many of the issues remain the same, often based in stigma, perceptions and lack of prioritization of resources. We continue to isolate people with disabilities in nursing facilities, institutions, psychiatric hospitals, jails and prisons, and under-resourced community homes. We criminalize mental illness. We under-resource our government benefits including residential programs, housing, food benefits, and employment supports. We fail to provide adequate access to accessible quality health care. We deny students meaningful educations. We prioritize the transportation needs of people who can drive.
While our society is inherently ableist, people who are multiply marginalized including BIPOC, unhoused, LGBTQIA, and immigrant people with disabilities are most impacted.
Can you speak to the importance of intersectionality in disability justice advocacy, and how we can work to ensure that marginalized communities are not left behind?
When working within a disability rights model of change, it is imperative that people with disabilities are involved – providing input into the prioritization of issues and the remedies, effectuating the motto “nothing about us without us.”
However, intersectionality is central to the Disability Justice framework or movement. The Disability Justice movement or framework requires that disabled people of color and of queer and gender non-conforming disabled people lead. To learn more, Sins Invalid provides an overview of Disability Justice.
What advice do you have for students interested in getting involved in advocacy work?
First, I do believe we can all have a role in achieving change, but those who are most impacted must lead the change, setting priorities, methods for change and remedies. Find your passion, but ensure that you are directly connected to and led by those who are most impacted, utilizing an intersectional approach to your work.
Second, take care of yourself. Secondary trauma is real and requires a lot of self-care and awareness.