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ADA Story July 28: Alexander

My ADA Story: Love, Care and the ADA

By Alexander

Alexander Photo

My life has never been “normal”. From the moment I was born, my family and I have dealt with adversity. I was born with the umbilical cord wrapped three times around my neck. The doctors quickly unwrapped it, but little did we know the damage it would cause nor the trajectory my life would take. 

Early on my parents knew something wasn’t quite right. The most notable was my body’s inability to have a normal sleep schedule. I could be forcibly woken up in the morning, but my body’s sleep patterns were erratic – sometimes I would stay awake for hours on end. This made it difficult for me to get regular rest so that I could attend school and be alert enough to learn.

The inability for my body to rest coupled with psychosis triggered nighttime hallucinations. I also began having nightmares. Often, I would only partially wake up and struggle to get out of the nightmare. I could not escape these intensive and exhaustive sleep disruptions. I would be mentally exhausted all the time which made it difficult to concentrate and learn in school.

I was first hospitalized when I was only seven years old. My parents were told I had severe psychosis and that my case was so unusual and severe that I should be institutionalized. But my parents were not ready to give up on me. It was a constant struggle for them to work and take care of me. But after many years of therapy, medications, treatments and studies, I started to feel human – like I wasn’t trapped in my own mind. Instead, I realized I could gain some control over my psychosis and that life was worth living, not just surviving.

I have some balance in my life. I’m not able to work because I have circadian rhythm disruption disorder which affects my ability to get consistently scheduled rest, but I enjoy taking care of our family dog, I like to long board and I really enjoy origami – in fact, I teach others how to do it too. I’m an engineer at heart, and I’m constantly interested in learning how things work. 

The ADA has helped break down barriers for people living with disabilities and mental health challenges – though there is still much more we can do to support and include people with disabilities. Had I been born just a few decades earlier, I doubt my fate would have been the same. I was fortunate to have parents with great jobs, good insurance and the money and time to ensure I received the care I needed. Not everyone is that fortunate. It’s only when we get to a place where people receive all the care they need – regardless of their socio-economic situation – can we say we’ve succeeded. 

I am thankful for the love, care and services I’ve received and only hope all that suffer from mental illness have the same opportunities and support to succeed. 

Quotes from Alexander:

“I am thankful for the love, care and services I’ve received and only hope all that suffer from mental illness have the same opportunities and support to succeed.”

“The ADA has helped break down barriers for people living with disabilities and mental health challenges – though there is still much more we can do to support and include people with disabilities. Had I been born just a few decades earlier, I doubt my fate would have been the same.”

Celebrating the 30th Anniversary of the ADA

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North Carolina Council on Developmental Disabilities

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This project was supported, in part by grant number 2001NCSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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