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Let's Redefine What It Means to Have Special Needs

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Many self-advocates in our community, myself included, are redefining what it means to have special needs. As we begin a new year, let us reflect on what it means to have special needs and what redefinition of special needs can mean to the mainstream community. Together, as we look at the state of special needs, we can redefine new opportunities, and enhance current ones, helping to bring full inclusion to our community. Eliminating division and decreasing challenges within our community will give us a greater ability to dream and to support each other’s dreams.

Twenty-eight years ago was a different time filled with much frustration for those of us with special needs. In my early years, I had lots of therapies that helped me develop and, to some degree, avoid frustration in my communication. Like others my age, I didn’t have access to as many resources as are available today to help us with communication. One therapy taught me a small amount of American Sign Language (ASL). According to my mom, there seemed to be only a few professionals using ASL at the time with hearing children. They were signing only minimally and not encouraging the families to embrace ASL fully.

In my early years, “we didn’t realize that, had we as parents used sign language with you, even though you could hear, we could have helped you avoid much frustration and helped you develop faster,” said my mom Linda. If there had been an innovation such as Signing Time, my family could have learned ASL alongside me and thus helped me avoid so much frustration with communication. Signing Time, a video series promoting ASL to eliminate communication barriers, was created 15 years ago by Emmy-nominated host Rachel Coleman. A quarter-century later, we are slowly making some progress.

As many parents receive a diagnosis of a disability when their baby is born, doctors tend to present it as tragic. It is, of course, often a very scary time for families. Many times, families within our special needs community spend months or more in the Neonatal Intensive Care Unit (NICU), or the “Baby ER” as Pulitzer Prize-winning author Edward Humes says in his book of the same name.

Often in the special needs community we end up divided among all the various types of disability diagnoses: from the deaf community to the Down syndrome community and everything in between. This division within our community can originate from a lack of understanding, and lead to a lack of acceptance and exclusion within society. In my early years I dealt with tons of frustration in communicating my wants and needs and personality.

As future families have children with special needs, “it is going to be different,” said Diane Compton, mother to a daughter with Down syndrome. “Maybe hard times, but it doesn’t have to be a tragedy.”

An innovation that has made a tremendous impact and eliminated communication barriers for Diane’s daughter, Erin, was Signing Time. “What I love about our Signing Time events, they’re unlike anything anywhere else,” said Coleman. “Even as families who have children with special needs, we divide ourselves up like ‘oh I’m going to the deaf stuff or ‘we’re going to the Down syndrome Buddy Walk.’”

Today we can point to examples of the progress that brings people together. Through the work done by nonprofits like my own Special Chronicles, nationally like Signing Time and Miss Amazing, and internationally like Special Olympics, positive change in the disability community is redefining what it means to be diagnosed with special needs. Today, we are seeing those of us with special needs in the workplace; at your local grocery store, coffee shop, and even as a newspaper columnist. Through movements like Special Olympics and Special Chronicles, we create a culture of understanding that leads to acceptance and inclusion for people of all abilities.

This year, we must redefine opportunities for people with special needs in innovative and creative ways. We can create a culture where diversity is not just appreciated, it’s celebrated. Amy Wright in Wilmington, N.C., started Bitty & Beau’s Coffee, a coffee shop that employs over 40 people with intellectual and developmental disabilities. This unique coffee shop is “pouring it forward” as their advertising says.

Special Chronicles, a nonprofit, new media network I created to give respect and voice to people with special needs, has redefined what it means to have special needs. In creating a media platform that reaches over 38,000 viewers in over 85 countries, I am redefining opportunities not just for myself but many others across our nation as contributors and on-air personalities.

“Full inclusion means the ability to dream, to support each other’s dreams and to dream big,” said Compton about Special Chronicles.

Although we have come a long way since the Americans with Disabilities Act and since  the  time when those with special needs were hidden away and institutionalized, our work must continue. This is especially true in light of news of President-Elect Trump’s possible attitudes towards the disability community. We must create more understanding and education, which will lead to more employment of those of us with disabilities.

Join me and let’s redefine what it means to have special needs. Together, we can create full inclusion by supporting the ability to dream big.

This column was originally printed on January 11, 2017 in The Bugle Newspapers.
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Originally published: January 19, 2017
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