Friday, November 4, 2016

How I Deal With Arguments In Support of Institutional Care

Ivanova Smith
@lauralovesian1

My name is Ivanova Smith and I am a proud autistic activist advocate. I advocate at the Washington State legislature! I testify at bill hearings about policies that affect me as a developmentally disabled person. One of the bills I put the most attention to is to shut down state institutions.

[Image: Ivanova Smith testifying against
a Bill that allow respite to be provided
at an institution! They have brown hair.
They are wearing black suit with grey
shirt and tie. They are speaking into
a microphone.]
There are four state-run institutions in Washington, and they hold 800 people with Intellectual/developmental disabilities (I/DD). These used to be called training schools. I have heard the arguments for support of these institutions many times while I have waited to give testimony. I have had to listen to all these arguments on why it OK to imprison people like me. These arguments are made by parents, union workers, and guardians. I have not seen one person with a disability advocate in support of the institutions.

I want to debunk these arguments for keeping the institutions open. It never valid to imprison a person for being disabled!

Argument 1: There is not enough funding for everyone to live in the community.

This is sadly a barrier we need to figure out. Residential support providers are shorthanded of staff because they don’t get enough wages to live on, let alone support their families and bring food to the table.

Self-Advocates in Leadership (SAIL, www.sailcoalition.org) is a legislative advocacy org that I belong to, we definitely see this as an issue. We advocate for providers to get increased wages so they don’t have live in poverty. But this argument should not be used to justify the imprisonment of people who have a disability.

My mother, who worked at a community-based residential program, has had to deal with this crisis. Lots of times when I was growing up, she got called into work when other providers could not make their shift because they did not have enough money to fix their only means of transportation. Lots of people come in and out of community-based support work. This turnover rate is very high and causes lots of stress for the people that need the supports. My mother would have retrain people constantly.

We need all community-based care workers to be seen as professionals who have high value. All support staff should at least be making a living wage with benefits so that more people want to stay in this work and not leave because they can’t afford to get food on the table.

Argument 2: The union workers would lose their state jobs that have benefits and good pay. 

This is one argument the state union puts before the legislature every year. It is frustrating because community providers get paid so much less than support staff who work in an institution. Community providers should also be getting a living wage with benefits.

This is why I support state operated community supports called SOLAs (http://arcwa.org/index.php/library/state_operated_living_alternative_sola), which are state-operated so there are jobs people can go too. But I honestly think that all community support providers should getting living wages, not just those who work for the state.

Honestly this reasoning makes me think of prison guards being worried about losing their jobs because crime goes down and we don’t need as many prisons. It a good thing to not need more prisons!

Argument 3: But it is safer in the institution!

It is not safer. Families are getting lots of misinformation, because there are tons of eyewitness accounts of abusive practices still being done in our institutions. In 2013, Lakeland Village, a institution in eastern Washington, got 40,000 Community Model Services (CMS) violations for things like tying people on the toilets, and not allowing residents to just go outside. Many of the patients got bedsores from lack of movement.

There is no freedom in an institution, and it is not safer, because there is no way to escape abuse. There are too many cases of people being raped and sexually assaulted in institutional settings, and it is harder for anyone to speak out about this abuse if they are in an institutional setting.

Argument 4: The residents like being in the institution! 

[image: Child with short
brown hair wearing teal
overalls & a striped shirt.]
This one really gets at me because I actually know what is like to live in an institutional setting. This is the earliest picture I have of me, from when I was living in an institutional orphanage in Soviet-occupied Latvia. I was born there in 1988. I lived in an institutional orphanage for the first five-and-a-half years of my life. Every day was the same, and the clothes I wore were not my own. We did not have private property, we did not have choice in what we wanted to do or eat. If you spilled your food you were denied more. We did not even have toys. Every aspect of my life was control and dictated by someone else.

When I lived there I did not know my life could be any different. It was not until I was adopted by my family, and moved to the USA, that I saw the beauty that is freedom. I never wanted to go back to that institutional life.

I failed to learn my native language because of the effects of being institutionalized. My parents invited someone who knew Latvian to talk to me, and help relearn my native tongue. But I would cry when I heard my native language, because I was scared they were there to send me back to the orphanage, and this made my parents give up.

It was clear even when I just arrived in USA that I feared the institution.  When people leave the institutional setting they never want to go back because the freedom that community brings is way better and safer. If I had not been adopted, that would have been my life. When I turned six, they were going to transfer me to a mental institution that I could not have been adopted out of. I was five-and-a-half when I was adopted.

I think about that life. I think, “Would I been happy there if I did not know any different?” I know I would not have been able to learn to read, or learn to play, or learn what the world was about. Just because a person cannot express how they dislike institutional settings does not mean they do like them.

We all have a desire for freedom. That is why prison is seen as form of punishment. Nobody really wants their freedoms stripped away. Since people with I/DD are humans too, that is why we would not want to live in segregated and isolated institutional settings. That is imprisonment, and nobody wants to be imprisoned.

When I give my testimony and look at the legislators, I want them to know I am a human being and the people being imprisoned in these institutions are human beings! Nobody belongs in a institution for being disabled. The backlash I get hurts. People trying to tell me that I don’t know what I am talking about because I am verbal and got to live a meaningful live.

But I have gotten this far because I did not stay in that institution. I have gotten this far because there were people in my life that believed in inclusion. I want that for all intellectually and developmentally disabled people! I want that for all autistic people! We should never be imprisoned for having a disability!