“Nothing About Us, Without Us”

Editor’s note: These remarks by two Connecticut self-advocates were compiled by Dianne Bilyak, who interviewed or collaborated with them in Summer 2021. Evelyn Santiago has been active in the group Parents with Differing Cognitive Abilities as well as the peer advocacy group Parent Leadership and Encouragement. In 2016 she graduated from the Connecticut “Partners in Policymaking” advocacy training program. Chad Sinanian works part-time as an advocate at Ability Beyond and is on the board of The Arc Connecticut, which is committed to protecting the rights of people with intellectual and developmental disabilities. He studied criminal justice at Nassau (NY) Community College. He is a Chevalier of The Order of Demolay and a devout Reform Jew who attends services at the United Jewish Center in Danbury.

The motto “Nothing About Us, Without Us” was embraced in the disability rights movement in the 1990s to compel policymakers to include the voices of the people actually affected when creating programs related to disability.

By Evelyn Santiago and Chad Sinanian

EVELYN SANTIAGO: I am a single parent and a Hispanic-American mother with two grown bi-racial sons. I am a person with disabilities and also hearing-impaired. I work as a part-time cake decorator; baking is my soul of passion.

I grew up in the Bronx and my parents raised me as Catholic and we attended Sunday Mass. It was a welcoming experience; all the people knew each other. Those days, all were welcomed to attend church and events; it was very much connected with the neighborhood. I grew up most of my life in the same church my family has belonged to.

I am a person with disabilities and also hearing-impaired. I work as a part-time cake decorator; baking is my soul of passion.

From the late 60s and early 70s, that church did not have an interpreter or accessibility services for people with disabilities. I do remember I was seated in the front row so I could lip-read the priests and parishioners doing the readings. There were hardly any wheelchairs at the time, until later. 

I do miss my hometown church from the Bronx. I went back to New York about four years ago and visited my godmother for her birthday and my beloved parents who are in heaven. I went and visited the church I attended and a lot of things have changed. They now have interpreters for hearing and the visually impaired. There are wheelchair ramps and an elevator to assist a person with physical disabilities. I felt so nostalgic being there. It was nice to see good things have come along allowing people with disabilities to go to church. 

I’ve lived in Manchester, CT, for 14 years. There is a Catholic Church I attend and they have an interpreter and accessibility services. I miss attending Sunday Mass because of work, but I do go on my days off, just to spend time alone to pray so I don’t feel left out. I am no stranger to them. I am always welcome. Their doors are open to all. 

Growing up, my parents were volunteers at my home church events like bake sales, study groups, dinners, kids camp, holidays, and so on. Now, I volunteer my time doing advocacy work. I first became a self-advocate when one of the social workers at the state Department of Social Services overheard my concerns and decided to give me a caseworker and a social worker to help with my issues. I had tried to go to individual agencies like The Connection Inc. and KidSafe CT, but they weren’t connected to the various support services many of us need, and they weren’t required to work together. Because there was also a lack of transportation to the agency from where I lived, I had trouble getting there.

Because transportation was a difficult challenge for me, my caseworker and my social worker decided to meet at my place. Both women knew my story very well. I asked if there was a way to connect any agencies and/or services together because I had both a traumatic experience and a disability. My caseworker was moved and inspired about my idea of collaboration. She asked if I’d ever been an advocate. I never had. It was my first time speaking out. Since then, I’ve been invited to some agencies and given testimonies and speeches. 

I participated in, and gave my first live hearing, at the state legislature, which I’ll never forget. I remember there was an announcement that we were not allowed to interrupt others or applaud during the hearing. When my name came up to speak I had to face about 15 legislators and read my testimony in three minutes–this was not easy! At the podium, I was being myself and making eye contact with everyone. After reading my testimony, I received loud applause. Everyone was standing and clapped for my sons and me. Even though the rules were broken, it was phenomenal as well as emotional.

Being a self-advocate in this way can help others to experience their voices being heard and to encourage the strength of a movement in the hopes that various issues can see new possibilities. It is a challenge, but we can’t give up until our missions are accomplished.

CHAD SINANIAN: I’m Chad Sinanian, a gung-ho, hard-charging, and dedicated advocate for persons with disabilities. I’ve been a board member of People First of Connecticut since the fall of 2001. People First has worked very hard to improve the lives of us persons with disabilities for many years, lobbying for gainful employment for equal wages (not chump change), closing institutions like Mansfield Training School, eliminating labels, stereotyping, discrimination against persons with disabilities, encouraging community placement, eliminating the hated and hurtful “R” word, and working hard to impress upon people that we have intelligence and capabilities.

If you want to, you can do things with your lives other than piecemeal work in some sheltered workshop. If you have ambitions about going to college, tell someone, be outspoken. 

Being a member of People First has taught me a lot. But it was my experience with my synagogue, The United Jewish Center, that gave me a true sense of belonging. The people there have always made me feel at home. It’s been like my family since they “adopted me” in June of 1992. 

I want to share a quick story of why I felt like family. I wasn’t even there a year, and the rabbi and his wife were having a private dinner for the top brass of the center. I came early for the service and I went up to the chapel to pray. The rabbi and his wife saw me sitting alone and invited me to the dinner. They didn’t exclude me and that always made a big impression on me. I hope more churches or synagogues make persons with disabilities feel welcome and show everyone compassion. 

I do a lot of advocacy using my Facebook page to post encouraging messages. I’m always fighting for our rights to be respected as dignified human beings, to live in our communities and be accepted/respected by everyone else, and for the right to have a say in our lives. I encourage others to advocate for themselves, set goals and ambitions, and challenge special education support staff, therapists, psychiatrists, and psychologists. 

I tell my peers: If you want to, you can do things with your lives other than piecemeal work in some sheltered workshop, you can learn advanced job skills and a trade and not do menial labor. If you have ambitions about going to college, tell someone, be outspoken. Don’t let anyone tell you what your limitations are. Each of you deserves the right and the chance to learn for yourselves. 

It’s up to us persons with disabilities to fight for our right to succeed, not fail. We have the right to make our own decisions, learn from our mistakes, the right to pursue our ambitions and desires. I firmly and strongly believe that we persons with disabilities are capable and destined to do more. We don’t belong in institutions and group homes just sitting around watching TV and twiddling our thumbs.

It’s up to all persons with disabilities, adolescents, and adults to show our confidence, guts, determination and backbone, to advocate for ourselves. So long as we persons with disabilities aren’t doing anything that is dangerous to our safety, our wellbeing, or the safety or wellbeing of others, we have the right to do whatever we want without being interfered with.