b'ing stigma-free

3d-singing“Hey Retard!” were the words I heard every day when I walked into school, from first grade until the end of high school. As an individual growing up with Williams Syndrome, the word ‘retard’ made me feel isolated, as if I had no one to turn to as a friend. This mental abuse caused me to question who I was. I would often ask myself, “Why did I have to have a disability?” I’d cry to my mom in the hopes that she would let me stay home from school. I wasn’t proud of myself because of my disability and I struggled to find peers who didn’t view me differently. In grade school, no one ever took the time to see me for who I truly was. They only saw my disability and not the astounding abilities that I possess.

After finishing high school I was accepted to attend Berkshire Hill Music School in Boston, Massachusetts. It wasn’t until I went away to college that I finally escaped the abuse of my classmates and other peers. College offered me a breath of fresh air and I was able to see the light at the end of the tunnel of my dark past. For the first time I felt included, as if I was a “normal” person, integrated with my typical peers. I went to school without being judged because of my disability.

They only saw my disability and not the astounding abilities that I possess.

I am now able to call myself a friend, an employee, and an advocate in my community. I no longer see myself as a disability, something I believed I was for so many years: nothing more than a ‘retard.’ Being called this and thought of so negatively is dehumanizing. This is something that MUST be changed within our society. Individuals with disabilities are so much more than the “r-word.”

Join me in celebrating Spread the Word to End the Word, a national campaign supported by Best Buddies and Special Olympics that brings awareness to ending the disrespectful use of the r-word. As an individual with a disability, I have proven myself to be capable of everything all of my peers are. I have taught at an international conference; I have spoken at national events as a Best Buddies Ambassador; I volunteer in the community; I have held competitive employment positions; and I am now able to consider myself a true friend. None of these things fall under the stigma of the “r-word.”

Because we are different does not mean we are less.

I used to lack any awareness of my own self-worth. However, I now have the confidence to stand up for myself, and also others who might be the victim of bullying. In fact, I am proud to have Williams Syndrome and proud to be a leader in the community helping to Spread the Word to End the Word in the hopes that all people with a disability are not thought of in a negative way. End the use of the “r-word”, so that individuals with a disability are looked upon as equals. Because we are different does not mean we are less.

 

Rachel Lipke graduated from Berkshire Hills Music School in Boston, where she studied music. While there she was matched in a one-to-one friendship through Best Buddies, which changed her life. Best Buddies is an international non-profit organization that focuses on enhancing the lives of individuals with intellectual and developmental disabilities (IDD) through one-to-one friendships, integrated employment, and leadership development. Rachel says that Best Buddies enriched her life by giving the gift of all three, offering the much-needed self-confidence she had been seeking. 

Since joining Best Buddies twelve years ago, Rachel quickly excelled in her passion for inclusion by completing ambassador trainings and speaking at local and national events. Rachel continued to challenge perceptions about the abilities of people with IDD by shifting from student to teacher, and began leading ambassador trainings. In this role she serves as an instructor and coach for her peers. Rachel was recognized for her achievements by being awarded the “Spirit of Courage Award” at the Best Buddies International Leadership Conference. She is also matched in the friendship program, and recently joined the jobs program providing her the opportunity for competitive employment. Rachel also volunteers in her community and is passionate about sharing her story to make a change in the world.

Rachel grew up in Chicago and moved to Maryland with her parents two years ago to be closer to her sister and her newborn niece.

Photo: Best Buddies Rachel (on the right) and Amy Davies.


 

ASL alphabetSeptember is when we celebrate the International Week of the Deaf: a time to recognize the culture, language and heritage of the deaf community. People would ask why would we celebrate a disability. Being deaf is much more than just a disability. It is an identity that we live on a daily basis. Some of us were born deaf; some of us became deaf at an early age, or later in life. For many of us, we have taken pride in being deaf – this is who we are.

When parents first learn that their newborn or child is deaf, they become fearful of the unknown. Medical doctors want to offer a solution for every deaf baby; they are trained to come up with a cure. Cochlear implants are placed on babies oftentimes without recognizing its effect on American Sign Language (ASL) acquisition[1]. ASL is the backbone to our deaf community and most importantly, I believe a basic human right for every Deaf[2] individual.

Inclusion

Prior to learning sign language, I was raised to speak and “hear” spoken English. Yes, I learned to speak well and lip-read for the most part. However, I wasn’t granted automatic access to the general society. Can you imagine growing up, not being able to understand or communicate with others? Many of us try to fit into society. We pretend to understand what other people are saying, but are unable to tell the difference between “P”, “B”, or “M”. Growing up with hearing peers and trying to fit in groups did not have a positive outcome. We don’t get invited to parties. No one wants to hang out with us because we are not “normal.” We will always be different, no matter how hard we try to be like everyone else.

Deaf people are capable of anything. There are deaf doctors, deaf lawyers, deaf school administrators, deaf government officials, deaf chefs, deaf dancers, and deaf musicians. The list can go on and on. The unfortunate thing is that many employers are reluctant to hire a deaf person because they lack understanding. They are missing out on some of the best talent in the market.

The Law

The Americans with Disabilities Act (ADA), enacted 25 years ago, requires hospitals and clinics to provide sign language interpreters for patient communication[3]. Despite this, many hospitals still refuse to do so, even when a deaf person is in desperate need for full communication during an emergency. Can you imagine going through pain and being unable to communicate with the medical professionals? Or vice versa? We must reach those who are making such important policy decisions so

Sometimes, when strangers realize that we are deaf they apologize profusely. But this is unnecessary; I am not sorry that I am deaf. I am proud of who I am, and I would not trade it for anything. I am only sorry that other people don’t get to experience the rich experiences we go through as a deaf person. This is how G-d created us. Join us in embracing our beautiful sign language and celebrate our deaf culture in September.

 

[1] Gale, Elaine. J. Deaf Stud. Deaf Educ. (2011)16 (1): 121-139. doi: 10.1093/deafed/enq044

[2] Frequently Asked Questions about Community and Culture, National Association of the Deaf. Accessed August 26, 2015, http://nad.org/issues/american-sign-language/community-and-culture-faq

[3] US Department of Justice, ADA Business Brief. Accessed 8/25/15, http://www.ada.gov/hospcombr.htm.

 

Chris WagnerChris Wagner, National Association of the Deaf (NAD) President since 2012, is currently the vice president of marketing for The Z™. Prior to assuming his current role, Chris served as a consultant and as executive director of non-profit agencies in Florida. He has served on numerous boards, including the Florida Association of the Deaf, Inc. (FAD) and the Governor’s Americans with Disabilities Act Working Group (ADAWG). Currently he serves on the Board of the Florida School for the Deaf and the Blind and the NTID Foundation Board.

Chris earned a bachelor’s degree from Rochester Institute of Technology (RIT) in Rochester, NY is a recipient of several awards for his outstanding leadership and advocacy on both state and national levels. He is involved with the NAD because he believes that in order to achieve our goals as a community, we must contribute our skills and knowledge as a volunteer. The NAD has given Chris the opportunity to give back to the community. In the little free time he has, he enjoys traveling and spending quiet time with his family and close friends, and escaping to his summer retreat in North Carolina.

The National Association for the Deaf was established in 1880 by deaf leaders who believed in the right of the American deaf community to use sign language; to congregate on issues important to them; and to have its interests represented at the national level. As a nonprofit federation, the mission of the NAD is to preserve, protect, and promote the civil, human, and linguistic rights of deaf and hard of hearing people in the United States. The advocacy scope of the NAD is broad, covering the breadth of a lifetime and impacting future generations in the areas of early intervention, education, employment, health care, technology, telecommunications, youth leadership, and more.


Barcode image - Labels in the WorkplaceA few years ago I worked in an office with several forensic psychiatrists. They didn’t meet with patients as my own life-saving psychiatrist did; rather, they reviewed disability files to help determine whether the claimant was capable of re-entering the workforce.

Every week we’d all meet to go over difficult cases and get feedback from each other. The sole layperson in these meetings, I attended as a learning experience, and I was often shocked and offended by what the psychiatrists said about the claimants. “I wish I could have time off work because of stress,” they’d say, or “Oh, boo-hoo. She had a panic attack once and hasn’t been back to work since.”

While not every claimant needed extended time off, and it’s often therapeutic to get back into the swing of things, I didn’t appreciate how even the psychiatrists’ valid opinions were expressed—with judgmental bitterness. These attitudes made me feel really uncomfortable; I worried what they meant for the claimants who had legitimate reasons for needing extra care. The review team labeled the claimants, and then surmised the validity based on that label. How could these reviewers assess the situation and then offer a fair, professional opinion when they couldn’t contain their personal biases?

So I spoke up.

I met with both the owner of the company and the woman who ran the meeting and was disappointed to realize they didn’t take any of my concerns seriously. When I told them I have obsessive-compulsive disorder (OCD), their tough demeanor changed. With a sympathetic look on his face, the owner said, “You shouldn’t feel bad about that. We all have quirks.”

“I don’t feel bad,” I said. “The point in me telling you I have OCD is to illustrate that you can never know who might have a mental illness. If I have OCD and no one realized it, who else here is going through something and may feel alienated? What if someone makes a joke about schizophrenia, not knowing someone three chairs down has a relative with schizophrenia?”

“You know, those are closed meetings, and our reviewers need to feel comfortable to let loose. This can be a very stressful job,” he told me. “The meetings aren’t going to change. But you can develop a thicker skin and be less sensitive.”

Blood rushed to my face. “No,” I said. “I won’t be less sensitive. I like having a thin skin. It’s a huge part of who I am.”

I didn’t realize I’d be so assertive, but I also hadn’t realized he’d refuse to meet me halfway. Everyone else—those who were making rude comments in meetings and joking about alcoholism and “being OCD” in the break room—they were okay. They had permission to continue being insensitive. On the other hand, the powers-that-be said that if I was going to be so upset by the meetings, I should just stop attending them. Even when faced with the effect of the stigmatizing language, they dismissed me. By labeling me, and others, as having a mental illness, they seemed to feel their actions were justified.

I knew I had to quit this job. It was eating away at me. I sat down and had heart-to-hearts with the highest-ranking people in the company, and they told me to toughen up. They defended what was happening; they were okay that misconceptions were being perpetuated. And they didn’t care that one of their own employees felt uncomfortable in the workplace. I’ve wondered if they’d taken me more seriously if I hadn’t outed myself as having OCD. What I considered a strong point in my argument could have been the weakest link—I was just another squeaky wheel with a mental illness, not unlike the people who needed some time off from work.

A few days after I’d been told nothing would change, one of the psychiatrists joined me for lunch. “I want to thank you for reminding me what it means to be a good psychiatrist,” he said. “I work in forensics. I don’t have patients, and that makes it easy to forget that these claimants are people, too.”

I left the company knowing it hadn’t all been for naught. My frustration turned to empowerment, and within a year I’d signed a deal to write a book for teens and young adults with OCD. I may have had a positive impact on only one person at that office, but now I’m spreading my message of acceptance and sensitivity as far as I can, to anyone who will listen.

 

Image of author Alison DotsonAlison Dotson is a writer, copyeditor, and proofreader who was diagnosed with OCD at age 26, after suffering from “taboo” obsessions for more than a decade. Today, she still has occasional bad thoughts, but she now knows how to deal with them in healthy ways. Alison is the president of OCD Twin Cities, an affiliate of the International OCD Foundation, and has been featured as an OCD advocate on the International OCD Foundation Blog, the Huffington Post, and in Glamour magazine. She lives in Minneapolis, Minnesota, with her husband and two rescue dogs.

Alison is the author of Being Me with OCD: How I Learned to Obsess Less and Live My Life. You can find her book, along with other books about b‘ing stigma-free, in our bookstore.


Image of Staples High School Best Buddies 2014

The Buddies, 2014

Too frequently there is an invisible line that separates people with disabilities from those without. Best Buddies is a program that matches students who have intellectual disabilities with typical students in order to help build one-on-one friendships between them. Two buddies, Kait Smithson and Austin Brouillet, provide an inside perspective of their relationship to help us better understand some of the challenges faced every day. Austin’s experience is told by his father, Richard Brouillet. By sharing Kait and Austin’s story we hope to help people feel more comfortable engaging with others who may have a disability.

Kait says: When I first started as a freshman at Staples High School there were so many different clubs and after school activities to choose from to make new friends and meet new people. During “Club Rush” the people running the Best Buddies stand told me it’s a great opportunity to create one-on-one friendships with kids who have special needs.

Austin’s dad says: My son, Austin, has cerebral palsy. As a result, he has many disabilities, chief among them is that his ability to communicate is severely limited. However, despite his disabilities, Austin has many of the same wishes and desires that a typical teenage boy possesses. Austin strongly desires to have interactions with people his own age. Sadly, opportunities for those interactions, especially outside of school, are severely limited.

Kait says: Right away I realized that Best Buddies was so much fun. Not only did I meet such wonderful and friendly buddies, but I also met everyone in the club and I became friends with some of the other kids in the program too. I spent time with Austin, as well as another student, Wyatt. I got to know them and become friends. Sometimes we would hang out for a couple minutes at lunch, just to say Hi and see what they were up to.

Austin’s dad says: Austin does not have much of an “output mode”, so it requires great patience and diligence on the part of anyone trying to interact with him. The reality is that there are very few people of any age who are willing to take the time to engage with him.

Kait says: I had the honor of being Austin’s assistant peer buddy. Austin and I went to the Longshore skating rink with Best Buddies. I also went over to his house to decorate cupcakes and cookies during the winter. We read books and listened to music. Then another time, to support the Best Buddies Fashion show, Austin’s mom, Austin and I went around town to ask others for donations for the silent auction.

Austin’s dad says: Austin has had meaningful interactions with his peers in a myriad of social activities. Although I have a hard time finding the words to properly express the joy and happiness Austin feels when he is participating in these activities, his broad smiles and belly laughs say it all.

Kait says: This year I had so much fun with all the buddies, and all the kids. Everyone is so nice and inclusive that I am definitely going to sign up to participate next year. Working with Austin has taught me so much about how to communicate with him, how I can help him as a friend and what we can do together to make our friendship last for a long time. I am so happy I had the opportunity to have these experiences.

Austin’s dad says: I feel immeasurable gratitude to all of the selfless, dedicated people who create these wonderful, and invaluable, opportunities for Austin. The joy that Austin felt as a direct result of his experiences fills my heart with more than just a sense of gladness, but with an almost indefinable sense of peace and well-being.

 

Image of Kait Smithson

  Kait Smithson

Image of Austin Brouillet

  Austin Brouillet

This fall Austin Brouillet will be a junior at Staples High School. Austin loves to read books, take long walks and play ball.

Kait Smithson will be a sophomore at Staples High School this fall. Besides Best Buddies, Kait is very involved with the Staples Players, the school’s drama program.

Best Buddies provides opportunities for people with intellectual disabilities to form one-to-one friendships and find integrated employment. Best Buddies introduces socialization opportunities and job coaching, providing the necessary tools for people with intellectual disabilities to become more independent and, correspondingly, more included in the community.


 

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