Annie Burdick - Twin Cities, Minnesota
My Aunt Wendy was born with severe cognitive delays as a result of a virus my grandmother contracted while she was pregnant. Not long after, Wendy lost her hearing completely. As she grew up, in addition to these disabilities, she struggled with mood swings, OCD, and seizures. My grandparents fought for years to get her into schools and programs where she could find help and acceptance but were rejected time and time again, simply because their daughter had multiple disabilities instead of one. But they refused to let other people stop Wendy from reaching her potential. They petitioned for their child to be the first student with multiple disabilities at the Wisconsin School for the Deaf and the first deaf student at St. Coletta School and, in both cases, they were successful.
They never stopped fighting – even after Wendy had finished her schooling and, with better medication, had begun to stabilize in other ways as well, my grandparents continued to work towards a world where everyone with differences would be given the best possible opportunities.
It has been less than two years now since my grandfather passed away and Wendy moved in with my family. She has made every day a little (sometimes a lot) more challenging, but also more special. I left for college two months ago and not seeing Wendy, my favorite person in the world since I was extremely young, has been the hardest part. Even when I was a little girl, Wendy would stay at our house for a weekend every month or two and some of my most vivid and happy childhood memories are of doing things with her. One favorite activity of ours was “human pizza”, a bizarre game in which my aunt would lie on the ground and my siblings and I would cover her in a red blanket and various “toppings”. She’d just lay there and giggle, always so patient with us.
Patience as I discovered, was a skill I’d have to learn from Wendy once she moved in. As the oldest sibling, besides my mom, I took on the most Wendy responsibilities. She has a special way of making every simple thing more difficult and there were many times when she tested my limits and forced me to slow down and relax, a skill I’m glad to have now. It’s so hard to explain all of the ways my aunt has improved my life and the lives of everyone else she meets, but it’s true. Even if you were to encounter her in a store or restaurant, you’d recognize that you’d met someone truly special. She just has a way of bringing a little more light into the world.
For me, Wendy also inspired a very strong desire to work with and be around other people with disabilities, and I am so glad she did. Through special needs dances, Girl Scout projects and two years of Special Olympics coaching, I have collected quite the network of friends, all of whom I adore. Every time they see me, they cheer and run over to me with hugs and stories to share about their lives. Many of them have my phone number and call weekly (or daily). A couple others, my good friends Frank and Adam, are pen pals with my sister and I, and we continue to write letters, even now that I’m 5 hours away. These connections mean the world to me and I can’t imagine my life without all of these amazing, positive people. Even though they have encountered challenges and discrimination in their lives, they continue to bring only love and joy to others.
My aunt, as well as the majority of the people I volunteer with in the Special Olympics, work at VIP Services, in Elkhorn, Wisconsin. This is one of many companies around the state and the country that solely employ adults with disabilities and their mission is simply to empower them. In my opinion, they go above and beyond in accomplishing this goal. People like Wendy have the opportunity to go to work every day, have something useful to fill their time, interact and make friends with people like them, and earn a little money for themselves in the process. It’s also a great way for caregivers like my family to be able to have their own jobs and lives, without the pressure to take care of and entertain someone constantly. I honestly don’t know how some of the parents and guardians of VIP’s workers would function without those hours of peace and quiet each day.
Recently, however, the amazing work that organizations like VIP do for the community has been ignored and even threatened by decision makers
As far as the work done by clients at VIP, tasks vary daily, – companies can employ VIP to do simple jobs for them, such as packaging parts and products while other VIP employees work in the kitchen, serving lunch to the staff or cleaning dishes. There are also programs and classes that teach the disabled employees computer, communication or other skills. VIP also finds and facilitates outside jobs for some of the higher functioning adults, who then get the chance to work some or all weekdays at public businesses such as restaurants, stores and custodial services.
Recently, however, the amazing work that organizations like VIP do for the community has been ignored and even threatened by decision makers. The CMS Wisconsin Transition Plan is new proposed legislature that will severely reduce or completely cut off funding to companies that employ disabled adults. Proposals like this aren’t just happening in Wisconsin. States everywhere have been asked to observe and analyze CMS (Centers for Medicare/Medicaid Services) programs, and there are plenty of planned changes to the system in other states, too. They believe that all workers with special needs should be integrated into community jobs, just like everyone else. There’s just one problem. These people are not like everyone else. They are amazing, unique individuals, but they would often find it difficult or impossible to fit in at community workplace settings.
My aunt, for example, would be unable to communicate at a job, unless she had a translator with her at all times. In addition, she functions around the level of an 8 or 9 year old and requires frequent supervision. To make it worse, she has extreme OCD, demands routine and is extremely stubborn. Simply put, it would be impossible for her to leave the job she’s done for more than 20 years and begin working at a restaurant or grocery store where no one would understand or interact with her. It is not a stretch to imagine that there are thousands of others with similar situations in the state of Wisconsin, and many more around the country.
Like all of us, people with special needs crave human interaction and love making friends more than anything. In the community, people often have a hard time understanding and appreciating them, just because of their differences. People who do not have disabilities, out of ignorance or fear of the unknown, may even mock or put down disabled people, just because they talk, look or act differently. It’s sad, but true. This won’t change until ordinary people take the time to learn about and interact with their disabled community members. However, the circumstances also won’t evolve if people with special needs don’t have the opportunity to learn valuable skills at companies like VIP all around the country.
To see people fight just to be given the same rights and respect as others, yet still be positive every day, truly fills my heart. If everyone had the same levels of tolerance, compassion, humor and genuine kindness as the disabled people that I’ve come to know over the years, the world’s communities would be infinitely more accepting. I can guarantee that everyone would smile more. Meet my aunt and you’ll understand what I mean.
Please look over the proposal, and call your representatives – ask them not to cut funding to disability employment services in your state!
In Wisconsin, want to get more involved? Check out this awesome group of activists over at http://ateamwisconsin.org/ and download this contact list so you can get in touch with decision makers regarding the policy!
About the Author
Annie is a freshman at the University of Minnesota, where she is majoring in English. She is interested in a vast number of issues, however she is particularly passionate about rights and respect for people with disabilities.