Who was Steven Murphy?

Steven was born like anyone else would be in Painesville Ohio and lived in lake county his whole life. Like many others he had an older brother (me), a loving mother (Michelle) and father (Randy). Steven also had many family members around him.

He was diagnosed with Autism at the age of three, at the concerns of his mom and her perseverance of telling the doctors "I’m not simple, there is something wrong with my son.”

Michelle got to work right away learning all she could about autism and other developmental disorders. She learned about the county board of developmental disabilities and went straight to work. She learned all she could by working the residential program, reading up on autism materials, and attending conferences.

At home, Steven was who Steven was, enjoying what could only be described as his own world. Many people were concerned. Would he ever communicate? Have friends? Go to college or marry? At the time I was too young to know about these questions as I was less than 2 years apart from Steven. As I grew older, I always wondered: why him and not me? Steven showed us over the years of his life that he could be anything he wanted: he could definitely communicate, have friends, even have intimate interests.

He had rough patches of course but still remained to the last day of his life a life-loving person with the best smile when he wanted to show it. He also showed everyone around him how to just enjoy life. Anyone who had been around him would be intoxicated with his laugh or his silly antics.

There were those who wouldn’t understand him and didn’t want to, but these people chose to have a small world.

What my brother meant to me was everything. At first, I didn’t understand why he had to be different, or why it wasn’t me. Then I came to realize that no matter the reason he taught me patience, the value of listening to and respecting others, and gave me my calling to help others in any way I could.

My mom had a similar experience and went on to work for the county board of DD for over 20 years. She continued the work at a provider agency for individuals with disabilities and learned as much as she could. She knew that Steven would need care as he was getting older and wanted to provide it for him.

She also learned through experience that there was a greater need than she realized for providers of in-home and community supports regardless of the level of disability.

I eventually learned that along the way as well. I worked with people since I was 15 years old and could see that there was a missing link between providers and a lived experience. And as I got older I too learned I had my neurodivergence and differences as well.

Steven eventually moved out of his family home in his twenties and was able to blossom as an adult. His staff spoke of what a wonderful person he was to work with and that they never had a hard time enjoying themselves. This was in stark contrast to what we were experiencing with how he was acting at home; he must have really been able to be himself outside of the house.

We were unbelievably proud of him and his progress. He continued to progress and build relationships with his caregivers and others in the community. He experienced trips to places he had never been before, and I was blessed with the ability to take him to some of those places. My brother and I also made a habit of going on hikes together in different parks around the tri-county area which was a very enjoyable and brought us both joy beyond measure.

Something else happened almost without us noticing: Steven was becoming a stronger part of our family. My wife Stephanie was always along for our outings and Steven was enjoying himself more at our family events. He even attended events with his staff members and became a part of their family as well. Steven was able to meet his niece Madeline several times and was genuinely excited every time he did.

Things went well for quite some time, but then we got the call: Steven had choked on food and was in the hospital unresponsive. It had happened so suddenly and the next thing we knew the family was there at the hospital with him. He wouldn’t be able to come back, and a decision had to be made. We already had known, but to hear it was heart wrenching.

We celebrated his life in the weeks following and still mourn his loss to this day.

My mom and I were lost for some time. We teeter tottered on closing the business but hung on for our fantastic staff and the clients we had at the time. 

It took a little over a year to make the decision: we need to continue to work in this business not just because of Steven, but for Steven and for all individuals with disabilities. Regardless of diagnosis, age of onset of disability, population, or anything that makes us different, everyone deserves the opportunity to as independent as they can be.

We have found that these things make us the same: disabilities, aging, and dying.

And our job is to support and many people as we can through this life and its many challenges as best we can with our lived experiences.

In memory of:

~Steven Matthew Murphy 1990-2022~