We Have Choices

Stories of Real Lives Using Individualized Supports

We are the self advocates of New York State

As people with disabilities, we want you to know about the many lifestyle choices some of us have , particularly when we: Are seen as people first, with capacities to bring Have a personal dream, and a dream for a better community for all of us Have a circle of support, family and friends who care Obtain individualized supports and great support workers who help us achieve our dreams Have access to meaningful jobs for a decent wage

WHEEL POWER . . . shows eight ways that we are choosing to be valued members of community life. We believe that all people with disabilities can live a full and robust life in one, if not all, of these eight areas.

WE HOPE you are inspired to make new choices by learning more about what so many people are doing.

THESE ARE THE EIGHT PARTS OF THE WHEEL...

TEACHING, LEARNING & ACTIVATING CHANGE

COMMUNITY MEMBERSHIP AND SERVICE

SUPPORTING FRIENDSHIPS AND FAMILY LIFE

You are about to meet many people who are living out these options.

Most of them did not always have this variety of choices. Their lives were often limited by: Low expectations and poor reputations Segregated days and homes Isolation and discrimination Lack of individualized supports

However, They have chosen to activate real choices , and they have done so by working together with others.

The Individualized Supports Think Tank…

The Individualized Supports Think Tank Is building partnerships to create many more ways that we can obtain the supports needed to live our dreams. The inside of the wheel outlines eight partnerships working together to create change in New York State.

We hope you will see your place in these partnerships and work together to activate the development of individualized supports.

Now, let’s hear some stories…

We want real jobs in community life

Some people want to work full time…

Others want to work part time…

“ I have written poetry all of my life, and finally in the past several years, have created a business of it called “Handmade Poetry .”

I published “ Reflections of My Life,” a book of my poems. The poems have also been framed and are sold as inspirational posters.

I also give poetry readings and train professionals about working with people with disabilities.

“ I am now working on a plan to move into my own apartment through self-determination . I will continue to grow my two businesses with more support.”

Learning, teaching, leadership & activism

Many people are involved in Self-Advocacy…

“ Self-Advocacy is the best way for me to express myself in a group where you can speak out about issues with people that understand.”

As an AmeriCorps member, I have worked on a lot of important issues such as transportation for people who use wheelchairs.

Another issue we face is voting… there are a lot of polling places that are not accessible to people that are disabled.

“ I have changed by learning to take a leadership role and give advice to others. I feel good about myself as a person with a disability .”

Some people are Self-Advocacy Leaders…

“ I am 44 years old and I live in Manhattan with a roommate. I have a dream of leaving my day program and working in retail .”

I have been involved with Self-Advocacy for a good five years and I have been a member of the Self-Advocacy Board of Directors for three years.

Being a board member makes me feel strong. I like to speak up for myself and my friends.

“ It is our job to protect the rights of people who cannot speak up for themselves.”

“ It makes me feel like I have power for a change. We are slowly gaining more power than we had and finally getting more respect.”

Some people are going to college to gain skills…

“ In 2001 I was attending a traditional Day Hab Program but I wasn’t satisfied. I wanted more .”

I began attending college classes in the evening at Lehman College. I got my certificate in Medical Billing . I graduated with an “ A ”.

“ I was hired by the Department of Mental Health and Hygiene one day a week, doing data entry and research on the internet.”

“ I then became a part of Americorps program, which helped me come out of my safety zone and overcome my shyness.”

“ I want society to realize if you have a physical or mental disability, you still have choices in life! ”

“ I am creating a life by attending college. I like studying and learning all I can.”

I need to have someone with me in order to attend class because I cannot speak, and I need support in order to participate in class.

“ I am able to hire someone to go with me to class through self-determination. I can determine what is important to me and use my funds for that purpose.”

I want to always be part of the world and be a member of society. I want to work in the caring field of social work , and so I must get an education.

“ I see myself as a ground breaker in college…

… With the support of my mom, my support friend Todd, and others, I can now follow my dream.”

Many people are volunteering…

Once Ken was known as a child who was deaf, blind and profoundly cognitively and medically impaired. He was also very self-abusive. His future was not very bright .

However, He is now a volunteer 30 hours a week at the Adriance Farm in Queens, New York. He is responsible for gathering, washing and packaging the eggs.

Ken assists with many other jobs around the farm such as caring for the animals and working in the green house.

He has defied all the odds, stereotypes and limitations stacked against him, and so can you .

Other people are involved in community memberships…

“ I am a member of Toastmasters, which gives me experience in how to talk to people in public without getting nervous .”

Toastmasters is a community group in which everyone is working on becoming a better public speaker and others have welcomed me with open arms .

My hope is to go out in the community and train people on disability awareness . Corporations need to learn what to do when hiring people with disabilities.

“ This is part of my work as a Self-Advocate… taking the dignity of people with disabilities out into the world .”

Some people work, volunteer AND are involved in neighborhood life…

“ I am engaged with every aspect of my neighborhood and community.”

I volunteer as the music librarian at the radio station at the radio station at Brooklyn College.

“ I also volunteer in the mailroom at the Manhattan Supreme Courthouse .”

“ I am very involved in my church, and in my family, keeping track of everyone’s birthdays and other special occasions.”

Some people have art careers…

“ I am an artist and getting my artwork into the world is important.”

My art is represented By Pure Visions art studio. I started my painting and had my first pieces in a show and I sold 4 or 5!

I also had another job in the art world working for the artist Harvey Lloyd at his studio.

“ The Dalai Lama says live in the moment , you never know what’s going to happen in the future. I try to take his advice…

I’d like to be a famous artist of course, but more than that I want to be fulfilled .”

Others have careers in music…

“ I started doing gospel promotion when I was living in a residence. I would do it on my own time. People told me ‘It’s impossible, you’ll never do it’ .”

When you live in a group home they want to run your life, so I had to move out to my own apartment where I have lived on my own for thirteen years.

Gospel music for me is about getting out there and promoting the music .

“ My passion came from watching my father who was a gospel singer and a minister.”

“ I became a deacon when I was 29 years old. Now I am 49! ”

Many people express themselves through poetry…

“ Writing poetry is a way for me to bare my soul. Through poetry the real me comes out. I can say whatever I want in my poetry, I’m free .”

I am now learning to read and write so that I can write the poems that float through my head. I want to publish a book of my poems, I believe they will give people strength and inspiration .

I want to go to college and Study psychology . As a psychologist I want to give others my heart and listen to them in my own very unique way.

“ Life is really hard but poetry helps me survive. I want to give that determination to others .”

People with disabilities are creating their own families…

NANCY LEANDRO & MICHELLE SANTIAGO

“ We have been friends since we were kids. We met at school.”

We have disagreements but we have an understanding that we need to be real with each other.

“ When I need a sense of reality, I can get it from Nancy.” “ Other people are afraid to hurt my feelings or think I’m going to break. Michelle respects me as a woman , as whole person and as an adult.”

“ When I ran away from home, I went to Nancy’s house. That should tell you something .”

“ Dora and I met at an adult care center .”

“ We created and led our own poetry group and taught others how to write poetry.” “ Dora became my mentor in art, poetry and advocacy.”

Our friendship is unique and transcends age, race, religion, sex, abilities and sports teams! We’ve been friends for 10 years .

Dora is an 86 year old Jewish women who loves the New York Yankees and the New York Giants. I am a 37 year old African American man who loves the New York Mets and the New York Jets

“ We’ve shared so much of life together ,

from dressing up in drag for Halloween when we won first prize…

… to Dora seeing my girlfriends come and go. She still stands by me .”

“ I live in my own home and I strive to find my independence . Everything I do is about that.”

My first night alone in my apartment was hot and scary. I missed my family, But I survived.

“ I needed to detach from my parents. I knew that if something happened to them I needed to be OK. ”

It is fun to have my own home because I can make my own choices like who comes to visit, when I want to be alone, I come and go when I please, I don’t have to tell anyone where I am going and who with.

“ It is freedom. I have a support person for 12 hours, but I am still doing things on my own. ”

It is nice to have intimate time with my boyfriend without someone knocking on my door and peeking in. We can just intertwine and not have to worry about being insecure or having to cover ourselves up as human beings.

“ Having my own place makes me feel able and not disabled. I am proud and accepted .”

Nina grew up in Willowbrook State School and then moved out and lived in several large group homes. She was extremely frustrated in all of these places .

Nina does not speak and is labeled with autism. The only way she would express her frustration was to bite herself and damage her environment.

Now she lives in her own apartment with a roommate and 24 hour support. Her mother and her support circle made this all happen with the help of an agency that provides individualized supports.

This is Nina’s family the night of her house warming party when 30 people came together to celebrate her move into her own apartment.

She is also very involved in her neighborhood...

Since Nina has moved into her own place, and has an interesting life during the day, she has stopped her self-abusive behavior .

People say that Nina looks like a different person. She is relaxed and happy .

“ I began a new life in 2004 when I left an agency run group home and day service to move into my own home, and have my own life with self-determination .”

I live alone in my own apartment, with support staff always there to help me. I hire and supervise my own staff with the help of my parents.

My schedule during the day is determined by my personal priorities to work, volunteer, go to baseball games, get to appointments, and appear for speaking engagements which I do through the Self Advocacy Speakers Bureau.

“ In a group home and traditional day program, my activities had to work around the staff’s schedule …

… Through self-determination, my circle of support, and natural supports, I am finally directing my own life and I love it !!! ”

“ I am a Catholic. My faith stops me from going nuts! When my mom died my faith got me through those years .”

“ No matter what I am going through there was something positive .”

I go every week to church because it helps me feel closer to my mom. Three thousand people go to Saint Patrick’s Cathedral . I go by myself.

As a woman with a disability I have been through hell and back. My faith gives me strength and it gives me perspective .

“ Because of my faith, I have a purpose. I think I am here to help the next generation for people like me. Because we have a disability doesn’t mean we don’t want a life and choices like everyone else. ”

“ I ask God to help me out and give me strength because out there people treat you like, well it’s stereotypes …

I am Latin American and disabled. That’s who I am and I don’t run away from that .”

“ Being Columbian gives me a new perspective on things. I am proud of me and my ancestors. Anything is possible if you have the heart .”

“ We may speak different languages but we are all the same. We all struggle to make the world better for our families .”

Sports, Fitness, Adventure & Health

“ I went to Las Vegas with my friends Janice and Tim. This was my first vacation in 16 years and the first time I’ve been anywhere without my family.”

“ My family tried to discourage me from going, because they didn’t think I could do it without them. I proved them wrong .”

The trip was fun, even though I got stuck in the elevator at the MGM Grand Hotel.

I enjoyed checking out all the souvenir shops …

I rented a big scooter to get round , even though it was a little fast and I crashed into a roulette table.

“ I enjoyed riding the monorail and even the city bus to get around town!”

HARVEY PACHT: A VISION OF OUR FUTURE

“ I am a resident of the borough of Brooklyn. I am a home owner in the Canarsie neighborhood of Brooklyn.”

“ I have worked at The Self-Advocacy Association of NYS for fourteen years. Part of my job is to educate people in the community about disability issues.”

My wife and I were married For 23 years until she passed away in the fall of 2005. My late wife was also a person with a developmental disability. Many people expressed doubts about our ability to handle marriage. Ethel used to joke that those people probably wound up in divorce court while we stayed together for almost a quarter of a century.

Ethel and I wanted to adopt a child, and so we worked very hard to prove to the adoption agency that we would be capable parents. A beautiful baby girl we named Samantha was placed in our home in 1991 and now she is fifteen years old and thriving.

“ You never know what people with disabilities are capable of until you give them a chance. We all deserve the opportunity to be fully included in our communities and every aspect of life, not segregated or hidden away.”

At The Self-Advocacy Association of New York State we have some thoughts on the importance of being part of the community: We want to live our lives like all the other citizens of the community.

We want opportunities to live in our own homes or apartments; in neighborhoods and communities we choose.

We want to work at jobs and businesses with other members of our community, and we want opportunities to contribute volunteer services that help others.

We want to belong to clubs and organizations and pursue recreational and spiritual activities with other people in their communities.

We believe that we have a lot to offer our community: friendship, positive energy and service.

We are not asking this just for ourselves. We believe that a community’s strength is measured by its ability to include the gifts and contributions of all it’s members.

Our community is strong when it offers truly productive activities and the full responsibilities of citizenship to all of its members.

“ We Have Choices” is about working together to try to remove the barriers that prevent people with disabilities from being fully included in our communities. Sometimes those barriers are physical, other times the barriers are attitudinal.

“ We need to be sure that our hearts are fully accessible as well. I would like to see all people with disabilities throughout the world be full fledged members of their communities.

I would like to see all barriers and communities made accessible in every way.

We Have Choices

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We Have Choices