Changing Concepts of ‘Guardianship’

Last year, Jenny Hatch won a landmark legal case. You might not have heard of her unless you follow disability news, but the finding in her case was critically important for disability rights and the future of disabled people.

Hatch has Down Syndrome, and she wants to live independently. The court determined that she wasn’t able to live on her own, on the basis of ‘fitness’ assessments from third parties, but it also determined something else: while it felt she needed a guardian, it acknowledged that she had the right to choose that guardian. In other words, while the government could impose its will on a disabled person, she was still allowed some autonomy, which is a huge step forward.

And Hatch already knew who she wanted as a guardian: a couple who employed her and had already offered to have her live with them. Thus, she moved away from the custody of her mother and into their home, where her new guardians were directed to provide her with life skills training and experience to help her work towards independence, which is another big victory. There’s a common assumption with developmentally disabled people that they live in a static existence, unable to move forward, and Hatch is defying that by showing that she can develop life skills and is developing them with the eventual goal of living freely in the community on her own terms.

This case may not seem like a big deal to many nondisabled people, but it’s a huge step for the disability community. And it’s striking to see how far disabled people have come even in the last 100 years. There was a time when Hatch would have been incarcerated in an institution for life, forgotten about and erased from her family history. After that, she might have been institutionalised in a more open setting. In a more progressive era, sent to a group home. More recently, ‘allowed’ to live at home with her family. Today, given an opportunity to decide who she lives with and where because she is an independent human being with rights and autonomy.

What happened in Hatch’s case is known as ‘supported decision making,’ and it may be changing the face of guardianship in the United States. Her case was a first, but it hopefully will not be the last, which means much more freedom and many more options for disabled people who are deemed in need of guardians by the court. Activists are taking the hatch case as a sign for growing interest in supported decision making, and they’re up an organisation to promote it.

This is great because, for one thing, autonomy for disabled people is critical. Regardless of level of impairment and type of disability, disabled people are human beings, and should be treated as such. The freedom of movement and association are both recognised as basic rights in the US and as larger human rights around the world; yet, courts routinely deprive disabled people of both these rights on the grounds that a decision is ‘for their own good’ or ‘they don’t really understand’ or ‘they can’t make decisions,’ which runs utterly contrary to all that we should be standing for and believing in.

While someone’s decisions might not always appear logical or safe, that doesn’t mean that person’s decisions and desires shouldn’t play a role in where that person lives, who that person lives with, and what that person does. This should be a basic precept of rights for all people, yet it’s only a right guaranteed to nondisabled people and disabled people with a certain level of mobility and court-deemed ‘mental capacity.’ If you are one of the wrong sort of disabled people, you can quickly find your life at the mercy of someone else, someone who doesn’t know you, doesn’t understand you, and doesn’t really have a vested interest in your wellbeing.

The case also represents a major breakthrough on a very serious issue: caregiver abuse. Disabled people, especially those with developmental disabilities, are often viewed as easy targets for abuse, and are extremely vulnerable to caregiver abuse. They live in a world where abuse reports are minimised and ignored, where they’re told to be happy with what they have and appreciative of the fact that anyone will care for them. This even when ‘caregivers’ and ‘guardians’ are torturing and killing disabled people for amusement.

When disabled people have the right to speak out and to select their own guardians, the story changes radically. This empowers them with the ability to get out of dangerous situations, and to report abuse without having to fear being immediately sent to an institution while the court decides who should take over guardianship responsibilities. Instead, disabled people can out abusers and request safer, healthier housing where they will be respected and well-treated, and that’s a significant positive move for a community that has been struggling for recognition and safety.

Will supported decision making solve all problems everywhere immediately? No. But it will make a difference in the immediate lives of disabled people and in their long-term future. It also sends a clear message that thinking on disability is changing and support for more concrete, independent, autonomous disability rights is growing. The idea that disabled people should choose their own guardians would have been laughed out of court fifty years ago, and now it’s being taken seriously as something that should be considered and expanded beyond a single case and into the larger disability community.

Hatch is a trailblazer in more ways than one, and that makes her an amazing woman. She fought hard for what she wanted and believed in, and along the way, she made the world a better place for other disabled people. That’s a legacy to be immensely proud of.