My Time In An Institution

Many people don’t know my story very well. They don’t know how hard it was for me to accomplish what I have accomplished in my life. I did much of this alone—without any help from anyone, my mom, my dad. It was hard for me to fight and keep fighting for what I wanted, but that is the reason I am who I am.

When I got out of the institution in Scranton, I had just missed being sent to Pennhurst. It would have been my third institution. I had already spent ten years of my life institutionalized. When I left that system, I was asked to testify in a Philadelphia court and share my story in order to close the Pennhurst institution.

At the time, I had no idea what Pennhurst was. Lawyers explained the situation to me and ask that I tell my story as a self-advocate. I knew the system—knew it better than anyone—and because I lived inside institutions, I could speak to the conditions. The judge specifically asked for someone with my experience before making their decision.

Filmmakers for the Pennhurst documentary approached me and ask that I be taped sharing my story. On a snowy day I took the train from Harrisburg to Philly to be interviewed at my friend’s house to, again, speak to my time in facilities. It was that important.

Nobody knows the system better than those who lived it and I am happy that the film was made to show people what it was really like for the residents with disabilities in institutions. Some of the families that want these places open have no idea what happens in them, they just know that people are being treated or served and they don’t know what’s going on. This is why people need to know about community services.

My goal in life is to have each and every institution closed and to have disabled people out in the community working and doing what they love. That’s why this film is so important. I don’t want people with disabilities to be told that they can’t do anything or that they need to be watched all the time. We need to have our own lives.

If you’re like I was and want to leave an institution, you need to talk to family and friends first, if they’re in your life. If that is not possible, write a letter to legislators and tell them what you’ve been through. I honestly don’t think legislators know what happens and I would love the chance to take one of them inside and show them myself. I think they’d be amazed. I’ve witnessed people being abused every single day by staff.

These places felt like prison to me. Once you’re there, you’re there. If you feel like I did, I hope you’ll pray for the day when someone tells you you’re free.