Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Introduction

Our family’s disability advocacy story started more than 40 years ago when Evan was born with Down syndrome. Doctors told our parents to place him in an institution and go home and raise their other children. They said that Evan could never learn, have a job, or live independently.

Most people with disabilities like Evan were shuttered away from society in institutions then, and there was no such thing as community services yet. It was more than a decade before the Americans with Disabilities Act (ADA) and two decades before the Supreme Court’s Olmstead decision declared that people with disabilities have a civil right to community inclusion.

Our parents rejected the doctors’ advice and instead began creating a “rival image” of a life in the community for Evan. Within a few weeks of his birth, our parents connected with other families who were driven by a common vision that ALL children should be valued and included.

It’s hard to remember a time when we were not advocating together as a family. We fought for Georgia to offer community services. (Sadly, once we won that fight, Evan had to wait almost a decade to get them.) We fought for Evan to be included not only in classrooms with his nondisabled peers but also in extracurricular activities. We insisted that Evan have opportunities to attend sleepaway camp and become a bar mitzvah like his siblings.

Our parents had high expectations for all of their children. We were taught to advocate for ourselves and to stand up for anyone being treated unfairly. This is what brought us to disability advocacy. Below we share our individual perspectives.

Evan

I want to tell you about my life in my community and how important it is to me to be an independent man.

I graduated from Chamblee High School, where I was in the marching band and got to play and march at the football games. I made a lot of friends.

After graduation, I started working at the Marcus Jewish Community Center of Atlanta. I have worked there for 19 years. I work in the Health Club. I check the clients in on the computer. I make sure the equipment is working, collect used towels and fold clean ones. I love to talk to the people who come to the health club. I know all their names, and enjoy joking with them. My co-workers have become some of my best friends. They help me when I need extra help. We eat lunch together and go out together on the weekends. I even was the best man at my co-worker’s wedding!

I live in an apartment with a friend I chose as a roommate. I grocery shop, cook, clean the apartment, pay my bills, and manage my checkbook. I am my own guardian. I am able to be an independent man because of help from my Medicaid Waiver. It pays for transportation, a job coach, and a personal consultant who helps me with independent living skills.

I enjoy music, sports, and hanging out with my friends. I have a girlfriend and like going out with her. I perform in a theater group and am active in my synagogue. I vote in every election.

I am lucky to have a great family that supports me. I love my mom and dad; three sisters; two brothers-in-law; and one nephew and four nieces, who call me “Uncle Ev.”

I went to Partners in Policy Making to learn about advocacy. I learned so much about myself and helping others. I attended another program, called My Voice, My Participation, My Board, about how to be a leader in an advocacy organization. I love advocacy and am good at it! I am one of seven self-advocates on the Georgia Council on Developmental Disabilities. The Council gives me the chance to advocate in Georgia and nationally. I meet with my state and federal legislators, and I even got to introduce Governor Perdue at Georgia’s Disability Day.

Alison

Evan and I have always been close. As his big sister, I have helped him reach the goals he sets for himself, whether learning to read, ride a bike, or live on his own. My sisters and I each have a special relationship with Evan. They are involved in his daily life because they live near him. Even though I don’t live nearby, Evan often comes to me for help with big decisions or problems.

I decided to become a disability rights lawyer because of Evan. When Congress passed the ADA, I saw an unprecedented opportunity for change, giving a legal right to the things Evan and our family had spent over a decade fighting for. I wanted to make its promise real – that ALL people have a civil right to be included and valued members of society in all aspects of life, from education, to employment, to community living.

When I’m in court fighting to get people out of institutions, I think about what Evan’s life would have been if my parents listened to the doctors. When I meet with members of Congress about Medicaid, I talk about how hard it was to wait a decade for the community supports that have helped Evan live independently. My advocacy on disability employment is driven by seeing Evan thrive in a real job instead of working in a segregated sheltered workshop for pennies an hour.

People with disabilities must not only be included in advocacy but should be leading the conversation. Family members have important views to contribute; but we are not a substitute for people with disabilities!

Several years ago, Evan attended his first national disability conference and joined me as a speaker. I didn’t realize we’d be speaking before an audience of over 800 people! But as always, Evan rose to the occasion. Since then, we have presented together to advocates across the country.

Conclusion

Advocating is our special sibling connection. As Evan likes to say, disability advocacy runs in our family! Together, we are working towards a more inclusive and just world for ALL people.