The Self-Advocacy Movement: Changing the Face of Disability Policy

Vol. 42 No. 4

By

Ari Ne’eman served as president of the Autistic Self Advocacy Network from 2006 to 2016. From 2010 to 2015, he served as one of President Obama’s appointees to the National Council on Disability, the first openly autistic presidential appointee in U.S. history. Today, he serves as chief executive officer of MySupport.com, an online platform that helps connect people with disabilities to support workers who share their values.


Though many persist in viewing disability rights as a relatively milquetoast topic area devoted to pushing through requests for added funding in the face of public indifference, the field of late has enjoyed an unusually exciting level of controversy. Spurred by growing political involvement from people with disabilities (referred to as “self-advocates”) themselves, disability policy over the last decade has undergone a sea change.

Self-advocacy groups have promoted a more rights-based approach to disability policy, urging new frontiers in community inclusion that frequently involve taking steps well beyond the closure of state institutions (a process underway since 1960). Self-advocacy groups and their allies among family members and providers have successfully pushed a growing number of states to shift people with disabilities out of smaller congregate settings, like group homes and sheltered workshops, in favor of scattered-site housing and employment service provisions in the same homes and workplaces used by the general public. In addition, self-advocacy groups have urged reform to guardianship and conservatorship laws, introducing the concept of “supported decision making,” a legal construct that allows individuals to designate a supporter to provide decision-making assistance without ceding legal capacity and final decision-making authority. 

For attorneys and other human rights advocates seeking to engage with disability policy, these trends are tremendously important. While parents and providers have historically taken leadership roles in much prior disability advocacy, especially in the developmental and psychiatric disability sectors, the growing political strength of groups run by people with disabilities has shifted the focus of advocacy considerably. Self-advocacy groups frequently point out that parent organizations may be more likely to prioritize safety concerns over the autonomy and rights that are more frequently the focus of people with disabilities themselves. Furthermore, provider-led disability organizations may feel obligated to defend existing business models tied to legacy congregate programs, even if a growing body of research now argues in favor of more integrated models. 

What are the implications for those wishing to support the rights of Americans with disabilities? First and foremost, the involvement of people with disabilities in leadership roles from the very beginning is a must. The essence of the self-advocacy movement is “Nothing About Us Without Us.” Though family and professional allies are welcome and encouraged, they cannot be permitted to serve as proxies for people with disabilities locked out of a decision-making process. Second, those seeking to involve themselves in disability advocacy for the first time should take some time to familiarize themselves with the changing standards in disability service provision and best practice. That which was state of the art yesterday may today, with the benefit of additional research and input from those served, be seen as restrictive and overly isolating. To quote Anne Donnellan, one of the earliest academic proponents of progressive service provision in the field of autism services, “The mark of anyone good in our field is that they’re at least somewhat ashamed of what they were doing two decades ago.” 

Not since the de-institutionalization wars of the 1970s and ’80s has there been such intense debate on the future direction of disability advocacy. The legal field has an important role to play in such discussions—self-advocates are aligned with longstanding priorities of progressive legal advocates, seeking not only to ensure that the autonomy of people with disabilities is respected, but also that the needs of members of the disability community who belong to other marginalized groups are also acknowledged. In recent years, self-advocacy organizations have partnered with LGBTQ, racial justice, feminist, and general civil rights advocacy organizations in order to promote a common progressive agenda. As the self-advocacy movement continues to seek to push the boundaries of disability advocacy toward a more rights-based future, other progressive organizations and movements should consider reaching out and making common cause with a rising power in disability rights.

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