Whose Rights Are They Anyway? Self-Directed Care, Music Therapy, and Disability Justice

Americans with Disabilities Act and Self-Direction

In 1977, after several years of hemming and hawing by the federal government and persistent activism by members of the disabilities rights movement, Section 504, a provision that paved the way for the Americans with Disabilities Act (ADA) nearly 13 years later, was passed. The battles that were fought to get these provisions signed into law reversed a century and a half of discriminatory laws and practices against disabled people. After 1977, in the eyes of the law, disabled people were to be made as integrated into everyday society as possible. Whenever you come across accessible parking, automatic doors, ramps, Individualized Education Plans, service animals, and anything else that may make life more accommodating for disabled people, you have the incredible work of the disabled rights movement to thank.

Self-Directed Services

An important part of the disability rights movement was the ability for disabled people to be in control of their care. Self-directed care in Maryland, is when the people, or a trusted representative, control the kinds of care they receive. Ideally, the budget, planning process, and assistance needed are in the hands of the person getting the care. It is a system that empowers individuals with as much autonomy and choice as they deem appropriate.

Disabilities, Discrimination, and Injustice

Despite these legal affordances, many disabled people are still taken advantage of either by other individuals or the wider system as a whole. Disabled people are more than 2.5 times more likely to be victims of violence than non-disabled people, and in a 2012 study of the cultures of underperforming group homes, researchers found that these group homes had gross power imbalances, othering of the residents, staff-centeredness, and resistance. So while the chance to choose one’s care is possible, the culture of discrimination against disabled people makes it seem less like an actualized choice and more an illusion of free will.

A cropped picture of a group of adults singing with instruments. No faces are visible

How Music Therapy Supports Autonomy for Disabled Individuals

Considering the injustices within the current system, and considering that I am a music therapist in Annapolis, Maryland writing a music therapy blog post, the obvious question was, “Does music therapy have a role in promoting client autonomy for disabled people?” Hopefully, hearing that the answer is a resounding “Yes” is not a shock.

The opportunities for choice and autonomy in music therapy with disabled people ranges from individual- to community-based. On individual levels, client-shaped spaces can look like the client choosing songs and/or experiences, setting their own goals and objectives, and setting boundaries for what they are and are not available for. When working in the community, individual and group decision-making becomes integrated as people choose songs, group structure, and instruments.

Accessible therapies, like music therapy, also provides a non-verbal communication avenue for expression, so disabled clients who are either non-speaking or prioritize other forms of communication can use music as a means for decision-making. For example, when improvising with non-speaking clients, I’ve often found that they will model how I should play by demonstrating through their own playing. The depth of what we can share with each other is increased by the music we make together.

There is a world in which the ideals of 1977 and the ADA are realized. This world exists beyond the letter of the law, beyond the bare minimum of what is required of people to do. Disabled people not only deserve to be free from harm, they deserve to be treated as fully actualized human beings capable of making their own choices about how they receive the treatment they need. Music therapy is one component of this, and offers important avenues for decision-making. But it will take answering big questions before we are ready to move forward: When we imagine what a just world looks like, who is included in it? Who is left out of the picture? What does who we include (or exclude) say about who we are?