This blog post is written by a member of our community, Ivanova Smith, who is an intern at The Arc of King County. She is a self-advocate who is passionate about civil rights and disability history. We welcome other members of the community to share their blog ideas with us.
Recently I have seen more articles giving support to returning people with mental illness and people with intellectual and developmental disabilities (I/DD) to institutions. Two recent articles came to mind. First a New York Times article called, Modern Asylum written in February of 2015, and a more recent article from The Atlantic called, Who Decides Where Autistic Adults Live written in May 2015. Both of these articles state support for such facilities.
In the New York Times article, author Christine Montrose believes that people with mental illness were harmed when we moved towards deinstitutionalization. Lack of support in the community forced people into inappropriate places like prison. I see her logic. People are not getting the care they need and it makes them a risk of being dangerous to themselves or others. But my question is basic: Why does a person’s need for support have to bar them from freedom? I think focusing on how to get more funding into the community is better then returning to institutions. Montrose also believes that institutions for people with I/DD provide more “structure” without returning to the historical versions of institutions. I am not so sure because her argument is very similar to the one used by the medical professional who started creating institutions back in the 1800s.
In The Atlantic article, Amy S.F. Lutz supports the use of segregated settings for people with developmental disabilities (DD). The article begins by praising a residential program in New Jersey with 47 residents and a very structured program. But the activities that the residents are offered seem to come right out of an institutional history book. Residents were ‘fitting wood shapes in a puzzle’ as a vocational activity. Other activities included working in a green house, painting at the art studio and delivering food through Meals On Wheels. While they are nice activities, and can be fun, they are very limited and very limiting.
Lutz criticized the new Center for Medicare & Medicaid Services’ rules that make life more inclusive for developmentally disabled adults. I support these rules because people with I/DD deserve to be supported in the community where they have their own freedoms. I am tired of all these excuses for segregation. Her argument is that segregated campuses can better support large number of adults with I/DD. Although Lutz shows photos of residents in one of these settings, she didn’t ask them how they feel living there. Instead, she quoted parent testimonies in support for the setting.
Lutz suggests that many community settings can be ‘isolating’ for I/DD adults if they struggle to make friends. She adds that segregated settings make it easier for them to find relatable friends. While some people with I/DD have difficulties meeting new friends, isolating them is not the answer. Instead, we need to create a society where the community interacts with people who have disabilities so they become more accepting. When someone with a disability moves into your neighborhood, be more welcoming of them.
Lutz also stated that community activities can be overwhelming for some people with I/DD. It is true that some people with autism have sensory issues when joining in community activities. However, the possibility of sensory overload should not preclude them from their rights and community choices. Instead, a support staff person can find a quieter area for the person, where their senses are not being overworked. I think the support staff for that person should find something in a quieter area.
Lutz did mention another residential program that was designed like a campus. It allows people to have more freedom but it did not go in detail about how much freedom and privacy. My concern is that residents do not have total freedom.
One thing makes me very uncomfortable about both of these articles. Both authors seem to believe we have to be segregated from the community at large in order to get support and to make friends. There are times when people should be kept safe in isolation, for example when there is a danger of self-harm or aggressive behavior. However, these should be temporary incidents while the individual is treated with proper mental health care. I don’t think they need to be stuck in long term care for having an emotional episode. Once the person is stabilized, he or she should be welcomed back into the community. I believe that imprisonment in an institutional setting is not going to make anything better.
When I was in Ellensburg I was invited to an open house for a farmstead-like setting for men with intellectual and developmental disabilities. I hear about these places all the time, but it worries me that these new forms of institutions are really popular with parents. At first it looked really nice and friendly. The lighting was dimmed to avoid sensory issues and it was an open space design. While those aspects were nice, I was bothered by the structure of time and rules that were imposed on residents. They had a strict schedule with no flexibility for sleeping in on the weekend. They were not given any privacy, as security cameras were placed throughout the facility, including in bedrooms and bathrooms. They weren’t given a choice about how to spend their day, and they have very little control over their lives. The residents felt like they were imprisoned without any say.
Another important issue not addressed in either article is how adults with I/DD can build relationships of a romantic nature when they are in these institutionalized settings. While many people may view us as children mentally, we do have sexual desires, just like other adults. These institutions do not make room for the possibility of residents developing or having intimate relationships. I was recently at a workshop about sexual assault in long term care facilities where I learned that residents don’t get any privacy. This causes strains and creates an environment that is filled with sexual tension, which can lead to increased chances for sexual abuse.
Institutions do not show respect for the individuality of the people in their care. When people are free to make their own choices, they feel happy and more independent. We have to have choices in our schedule, what we eat, and how we want to live. We need to be allowed to live like any other adult. If we want to bring beer home after work, so be it. We want to have intimate relationships. We want to sleep in on a weekend, and sometimes choose an unhealthy snack. We want to go out at night, we want to hang out with friends, and we want to go on vacations. We also want to have a say in how we spend our income, just like any other adult does.
When I was a child, I was put in an institutional setting for the first five years of my life and it sucked. I had a rigid routine, and I had no say about what I was allowed to eat, wear, or play. I did not know I had choices until long after I was adopted. I learned what it was like to live without freedom, and I don’t want other people with I/DD to experience that.
I understand why some people want to create new institutions for people with I/DD, especially when the facilities say they support the rights of people like me. No matter how ‘good’ and ‘safe’ these settings claim to be, these institutions will not protect our autonomy. When you have lots of people that need support in one place, it is impossible to respect each person’s freedom of choice. Any parent who is considering the placement of their DD adult child into a place like this needs to consider what their child really wants and needs too. Parents need to realize that freedom is taken away from their child, and their child is going to be emotionally hurt by the lack of choice. I believe that parents need to find an alternative design for supportive living that allows for connection of friends and allows for free choice in their lifestyles.
There is a reason the majority of I/DD advocates have stated over and over that institutions need to end. We want our freedom, and we want future generations to have freedom, too. Just because people need support, that doesn’t mean their freedom needs to be taken away.