Talia Harris was diagnosed with Spinocerebellar Ataxia at age 24. This inspired her to start her own company where she now works as a Disability Consultant. Most importantly, Talia takes the time to engage in activities she really enjoys.
In my 20’s, someone pointed out that I had a change in the way I walk. Shortly after, I began to have headaches and would lose my balance. I knew something was wrong however, for years due to systemic racisms, doctors didn’t believe me and I would not get fair treatment. I finally found a Black doctor who did believe me and made sure that I had all of the basic testing needed. He saw a discrepancy and referred me to a specialist. He also thanked me for continuing to fight for a diagnosis. At age 24, I was diagnosed with Spinocerebellar Ataxia. After further genetic testing, it was narrowed down to SCA 28 SYNE-1. I enjoy doing things that allow me to get out and about but don’t exert a lot of energy such as traveling, going to museums and so much more.
Working in Human Services for 13 years, I have been exposed to working with those who have disabilities and disparities of various sorts. The stares, the questions, the feelings of shame and/or embarrassment, the unfair treatment… I heard it all the time from clients and patients I worked with. After my diagnosis, SCA didn’t affect me immediately. Once it did, I soon empathized more with past statements of others I have worked with. Instead of being upset about the challenges that I will face, I decided to change the statistics. As of 2019, I started my own company, Invited Eventz, where I am a Disability Consultant focusing on inclusion, accessibility, accommodations, and advocacy. I currently participate in activities and hobbies that allow me to enjoy life. My Ataxia awareness has varied as I am always bringing insight to communities, organizations, and individuals daily.
Since having my disability, the biggest lesson that I have learned is to appreciate the small things in life and the advice that I would give would be to enjoy life.
Thank you Talia Harris for sharing your story with us!
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