When I look up the word “tenacity” in the dictionary, I expect to see Katie Horsham’s profile right beside it. Persistence and determination are traits that allowed Katie to build upon her experiences growing up with Spina Bifida to connect with those she serves as an Independent Living Systems Resources Advocate.

As the oldest of three children in her family, Katie’s parents did not know she would be born with Spina Bifida. Their nurturing and support built a firm foundation for her growing-up years and continues now as an adult.

Katie attended one year of a special needs pre-school. The rest of her school years she was mainstreamed with accommodations for many of her classes. When her learning differences were discovered, she took some subjects in a special ed classroom.

Growing up with a foot, or in Katie’s situation (she uses a wheelchair), a wheel in each world created some tension. The special ed classes were too easy for her, and the typical classes were too challenging. She felt self-conscious at times, being in a self-contained classroom, wishing for a middle ground of learning.

But there was also a blessing in Katie’s dual educational track. She met people with all kinds of abilities and disabilities and counts among her friends, many who others may overlook.

You might think that after high school graduation Katie would have had her fill of education. But not so. Remember, I said she is tenacious. Through a process of trial and error, she learned she could handle taking two college classes per semester. This route allowed her to graduate with her Associate of Arts degree (AA) in ten years. Way to persist, Katie!

While studying for her AA, Katie worked full-time. She worked as a receptionist at the same agency from which she received support as a child, and still today. She loved meeting so many families as they came in and hearing some of their stories. After 13 years, she wanted to have a more active role in the lives of individuals and families affected by disability.

A friend found an ad for Katie’s perfect job. It was with a different social service agency, one that is under the Independent Living Center umbrella. It was also in a neighboring county. When Katie got the job, she not only had to learn a new position but also a new locale and familiarize herself with the services in that county. To someone with a learning disability, this may seem overwhelming. Katie took it in small bites and asked a lot of questions.

As an independent living advocate she found great joy in helping people with disabilities with housing, medical and other issues. She found her clients relatable because she too has to balance the tightrope of a paying job and receiving some benefits. Recently she became a Systems Advocate with the same agency. Through this role, Katie makes sure people with disabilities receive equal treatment and have access to all the community and resource information they need.

Though Katie has worked with this agency for nearly two years, she still describes every day as a learning opportunity. Currently, she and her co-workers are training in a new system to assist their clients. There is a deadline to complete the training, and it involves a great deal of reading, all online. This is one of the hardest ways for someone with her learning disabilities to learn. Some days, “I get overwhelmed. My head wants to explode. I want to say, I can’t do this. But I don’t give up. I am continuing to try.”

When those frustrations arise, Katie knows she needs to ask questions of her supervisor. She is also grateful her co-workers will help her process and learn the new system.

Katie tries “to cut her losses and succeed in her gifts and strengths.” These include her outgoing nature and love to talk with all people. She is empathic and identifies with others. “Because I have a disability, I have a good understanding of the fear others have about talking about themselves and opening up to others.”

School and employment are not the only hurdles Katie overcame. She has her license and drives a car equipped with hand controls. With help from her state, she purchased a home six years ago. Because the home is older, a chair lift will not fit properly in her staircases. That’s ok with Katie. She lives on the first floor and keeps the second floor for family visits.

When I asked what advice she would give parents, she defers to the example of her own parents–“They were supportive and there when I needed them.”

Katie’s best advice to others struggling with disability: “Try, try, try again! Don’t be afraid to ask for help, even when intimidated. Build your confidence to bolster your self-esteem when you need to ask others.”

Talking with Katie left me with the sense that people with disabilities in her area of New York are in exceptionally excellent hands with her as one of their advocates.

If you’d like to send Katie a note of encouragement, or ask a question, reach out to her at [email protected]

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