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Key points
- Self-determination is paramount for the disabled.
- Guardianship often strips the rights of the disabled.
- Support should not be mistaken for control.
Defining what constitutes support for the disabled is constantly evolving. While a majority of the people who need support the most often cannot voice their own needs, there are a growing number of activists with an autism diagnosis who are taking on the role for them. These “self-advocates” want laws that reflect basic human rights and apply to the entire spectrum of the disabled community.
Many self-advocates are constantly debating disability rights, and in the process, they are framing a new set of standards that they believe reflect a more inclusive representation of basic human rights. A lot of parents of autistic children that I interviewed complained that highly functioning autism self-advocates are more destructive than helpful, often taking the spotlight for themselves instead of focusing on where it is really needed, like the more severely handicapped. On the other hand, a majority of the self-advocates I interviewed argued that only those with an autism diagnosis should influence disability policy since they are those who are affected.
I contacted hundreds of self-advocates, and many either never responded or refused to talk with me. The other advocates who did speak with me were always considerate, and while I tried to understand the ideas behind their advocacy, I often walked away feeling that I didn’t entirely understand what they were advocating or where their priorities lay, but I did trust some of them enough to fight for someone like my son, who cannot fight for himself. And trusting someone’s good intentions, however messy the idealism behind those intentions might be, was distantly reassuring for an aging parent handing their child off to the world.
***
At 30, Lydia X. Z. Brown has a resume longer than most established academics. She’s a widely published advocate, adjunct lecturer for Georgetown and American University, and recognized by the White House as a “Champion of Change.”
On November 8th, 2022, Lydia Brown of the Democratic Party ran for election to the Maryland House of Delegates to represent District 7A. While they lost, they did join a growing number of openly autistic politicians like Yuh-Line Niou of the New York State Assembly, Jessica Benham of the Pennsylvania legislature, and Texas State Representative Briscoe Cain.
I asked their perspective on a variety of topics that I, myself, had been considering for my son as of late, such as guardianship, the future of advocacy, and self-determination. We spoke for a long time, but they asked that I either write about their political campaign or their work in the private sector. I chose the former. These are a few short excerpts, in their words, from that interview.
On the future
Many people I know are working toward a future in which the present conditions of the world no longer exist and are unimaginable because the present condition of the world is unsustainable. The future I envision is one where all people and all communities are able to be respected, treated with dignity, and are able to be honored both as individuals and within the context of the communities that they belong to culturally, religiously, ethnically, etc., and in which all people have the support, the resources and the care that they need to thrive.
On guardianship
Guardianship is a form of control that does not honor what we call in the disability community the dignity of risk. The dignity of risk recognizes that there is an inherent human dignity in a disabled person being able to make decisions that might be bad. Of course, you don’t want someone making a bad decision, but part of being human, growing, and having life experience is having the space to make even risky, foolish, and dangerous decisions.
People deserve support without coercion and control. But more specifically, I would point you toward the “Supported Decision-Making Framework” because that addresses what guardianship actually should do but does not. In reality, all people, whether they have a disability or not, need support in making decisions. If you think about what’s happened in your life when you’ve made major decisions, you probably made those decisions consulting someone else, whether that was a spouse, your own parents, best friends, supportive colleagues, or mentors. You wanted other people whom you trusted to give you their honest, unfiltered opinion and to give you an explanation for why they think that you should or should not do something.
The problem with guardianship is that it presumes that disabled people don’t need support but control. And the solution is recognizing that all people need support. Some people might need more types of support or more intense support or frequent support, but all people need support, and nobody needs to be controlled.
On getting the right support network
Some people have excellent relationships with their parents, who’ve never been controlling and who are supremely helpful. Others have a great emotional relationship with their parents, but their parents are just not helpful with making decisions.
Some people have excellent supportive relationships with their romantic partners. Other people have a romantic partner, but their romantic partner is not a support person. Other people are in a romantic relationship that is toxic, controlling, and abusive.
Some people have paid support from paid professionals, a social worker, a therapist, a care coordinator, or a case manager who is not controlling, understands the person and is committed to working with them, and is very supportive of their self-determination. Others are working with an abusive and controlling care worker or professional or professional support person.
There is no one prescriptive response to these scenarios, like all people with a disability should live with a caregiver or all people with disabilities should live on their own and in an apartment. What I advocate for is that everyone should be able to live a self-determined life with the support that they choose to help them with making whatever types of decisions where they need assistance.
On toxic, dependent relationships
There are people that can’t leave because their abuser is their primary care worker. There are people that can’t leave because their abuser is deeply tied to their family or their religious community. There are people that can’t leave because their abuser has literally hidden or sabotaged their mobility equipment. You don’t want someone to be in that situation, but you also can’t force somebody to leave. What you can do is offer them a way out. You can say, “If and when you are ready to leave, I will be there with transportation.”
On Utopia
One, people would be living in accessible homes. Two, people wouldn’t be financially dependent on an abuser because everybody would have financial support. This would be a matter of basic human rights.
Everybody would have guaranteed access to housing and quality and culturally responsive health care. Many of the conditions that presently engender and enable abuse literally wouldn’t exist. That doesn’t mean that nobody would be abusive, but people who were being abused might have access to a whole trove of resources and possibilities that currently are not available to most people who are being abused.
On self-determination
When I talk about self-determination, I mean self-determination for individual people as well as for communities. And if the community that is impacted by a set of policies or processes are not the people who are making the decision, then that community is not able to exercise self-determination.
***
I left my interview with Lydia X. Z. Brown feeling as if I didn’t really understand how many of their ideas were applicable to my son, but they also made it very clear that each person is different and has their own set of needs and didn’t feel comfortable speaking in generalizations. I admired their adamancy that support was not control, and even though it was as broad as it was vague, it was a good mantra to live by as my son approached adulthood and my role as father took on new dimensions.
