|Photo: Cristian | Flickr / Creative Commons
[image: Olive-skinned person with short dark hair, wearing swim briefs,
sitting wide-legged on a dune and tossing sand with outstretched hands.]
My passion for advocacy has always been about freedom! The idea that all people should get to be free to be in their community is my purpose. I am very passionate about freedom, because I know what it is like not to have it. I was institutionalized for the first five years of my life. We had no holidays, no birthdays, and no family. We were stuck inside the institution everyday. Everyday was the same. That is why these things are important to me.
When I became a disability civil rights activist, I met many leaders who I thought had my same values of freedom. Sadly now I see that is not the case. It is nine months into this pandemic, and I see many rights of my peers with I/DD (intellectual and developmental disabilities) and myself taken away.
When restrictions first started, I thought it would be temporary. Only two weeks to flatten the curve I kept being told. But month after month I realize these restrictions are not going away. The freedom to get a haircut when I wanted was something I did not expect to lose.
At first there weren’t mask mandates, so I was still able to go to the store. But then mask mandates took that away from me. Like many people with I/DD, I can’t handle anything on my face. I have trauma from people forcing sensory issues on me. It is painful, and people didn’t understand that.
When I joined the disability rights movement, I thought everyone had an understanding that it is important to respect people’s sensory issues. The self-advocacy movement fought for our rights to be in the community, not to be forced into sensory issues. But this pandemic made lots of people I respect turn their backs on that value, and started demanding that the only way people would be allowed in the community is to be forced into sensory issues. I also see ABA programs promoting forcing kids and adults with I/DD into sensory hell just to be allowed to go to school, or do community activities as basic as going shopping.
Many of my peers who live in supported living have not been allowed to go to work or be in their community since these restrictions started. Many are feeling isolated and imprisoned. My friend Mike, who is also the president of People First of Washington, has not been allowed in the community. It took a fight to get him access to technology to at least get to see other people virtually. It boils my blood seeing this happen.
I have been trapped in my house for the majority of the pandemic with my three-year-old daughter, who misses going on adventures with her Mutti (me). Before the pandemic I was very outgoing. Going to advocacy events and meetings, and fighting for inclusion with my little girl at my side. She loved meeting all my advocacy friends and seeing all the sights we wanted on public transit. All that was taken away and replaced with a computer screen. It has been hard on both of us.
I also used to do sports with Special Olympics. It helped with my mental health and physical health to get to play with my teammates. It made me happy and made many of my peers happy. Most days now I don’t want to get up, because so many of the rights of my community, the I/DD community, have been taken away. I feel like I am stuck in a car that keeps going backwards and backwards and I can’t make it stop.
I thought leaders in the disability movement would be up in arms about this, but I feel alone. So many people are justifying this cruelty to my community. The self-advocacy movement fought for decades for our right to be in community, and all that has been taken away. And excuse after excuse is made to justify it. It is cruel.
It is even worse for those who are living in adult family homes and other group living settings who have not been allowed to even go outside. Many are trapped, and this is causing trauma. I see posts of direct support providers complaining about the people they serve because emotions have been heightened, but what my peers are expressing is only natural. They are trapped, but they are not allowed to have negative emotions or else they get written up for “behaviors.” It is cruel.
I want this to end so badly. I want to see my teammates. I hate seeing the posts from my teammates and their families suffering. One of my teammates is being denied medical care. They are in great pain, but medical professionals are delaying their treatment using restrictions as an excuse. It is cruel, and so wrong.
I have cried lots because I feel like I am powerless to stop what is happening to my peers. I feel like I can’t continue my passion because so many leaders in the disability rights movement are against me, calling me selfish for wanting my peers and I to still have our freedoms respected. To have our sensory issues respected. People are just telling me to get over it. But I can’t. My peers are suffering and I am stuck at home, not able to change what happened.
I don’t know what to do. I am only one self advocate, and others who have power don’t want to help me stop this stuff. I feel so alone. I wish that car would stop going in reverse. So much ground the self advocacy movement had made has been lost in just nine months. It took decades, and all that hard work is gone.
Who will help me free our people? I always defined institutionalization as the administrative control of other people’s lives. Now I see that the state and country has become an institution, and I need help to deinstitutionalize what happened to my community and our world.
I had hoped that a vaccine would allow us to get our freedoms back, but then I see article after article saying no, even with a vaccine my community will not get our freedoms back. That is something I can’t accept. I can’t accept my peers and I am suffering anymore with this. We need our community back. We need our friends and family back. I will not accept institutionalization as “new normal,” yet that is what happened.