A Tribute to My Uncle

Michael Alan Matteson was born October 3rd, 1963 to parents Irma and John Matteson of Pacific Grove, California. Michael was born a short 11 months after his sister Kimberly (my mother) and had a birth defect called Spina Bifida. He was rushed to surgery soon after birth due to fluid in his brain, thus began the many surgeries he had in his lifetime. The doctors, at the time, said his life expectancy was 14 years - he lived to be 54. This is his story.

Kimberly(4) & Michael (3)

This story is not to paint my uncle as a hero, he would have never wanted that. He simply wanted to be just like everyone else. He never wanted to be told he couldn't do something that everyone else could do, and he lived his life defying others expectations. This mindset began with his parents who taught both of their children that there was nothing wrong with being different.

Many parents during the 1960s who had children with Spina Bifida, hid them away indoors to avoid shame and stigma. They believed the disability was pathological and many at the time used a moral or medical model, when thinking about disabled folks. (Olkin, 2002). Michael's parents were determined to show him and others that it was society that needed to catch up. They held a social model viewpoint and advocated for him to have the same rights as other children. Starting with public schools. When Michael was about to start Kindergarten, his parents took the local school district to court in order to allow him to attend public school. The administration at the school felt he would be too much of a liability, they were worried about who would pay if he was injured.

Michael's parents stated they would pay for his injuries if they did occur and agreed to a pre-enrollment aptitude test. The school wanted to see if Michael was cognitively impaired. They played heavily into the idea of disability "spread" where, "too often, sweeping generalizations are made erroneously...about people with a range of cognitive impairments to all people with disabilities (Olkin, 2002). Well, needless to say, Michael passed the test, even though they tried to say he failed when he sarcastically wrote his name backwards and upside down. He was so annoyed, even at 5 years old, that anyone would imply he didn't know how to write his own name. He said, "they didn't say how to write it!" - in a nutshell that was my Uncle.

Later that year, he was told he couldn't be in the Pacific Grove Butterfly Parade due to his crutches and "lack of ability". However, he was in the parade - pulled in a wagon by all of the children as "King of the Butterflies". He also had a Queen pulled in a wagon so he didn't feel like he was singled-out. Michael never wanted special treatment - even if he needed accommodations he'd rather them to go someone he believed needed it more than he did.

In addition to the policy changes in public schools, Michael was one of the first ten children in the United States to pilot a new style of Orthotic leg braces for individuals with spinal cord injuries. His parents didn't like the braces he had that were made of leather and metal which prevented his legs from growing normally.

Michael hated them because he had to wear the same ugly brown shoes everyday, that were connected to the braces. They went in search of something better, asked every doctor until finally, someone came to them. Thorkild J. Engen, "changed the lives of thousands of people, many of whom he never met. As a certified orthotist, he designed and built orthotic devices that enabled people with limb weakness to recover function and independence". This started with Michael and ten other patients in the 1970s. Engen made a new style of braces called Orthosis which was made from plastic instead of metal - It is light in weight, almost unnoticeable, requires no shoe modifications, and is relatively easy to fabricate and fit. For the first time, his legs grew and best of all - Michael could wear different shoes.

These braces were just one of the advancements that he was a part of, and none of it would have been possible if his parents weren't so proactive within their community. Michael's parents were very well-known in Pacific Grove and made good money - their privilege and donations from The March of Dimes allowed them to provide Michael with medical care. Despite his many privileges, he faced adversity throughout early childhood. He broke his legs over and over again due to the lack of feeling in his limbs and his unwillingness to give up on his dream to play sports. He was in and out of the hospital for most of elementary school.

During Junior high and High School he was very popular due to his infectious attitude and charismatic charm - he dated many girls, played sports, and excelled academically. The close-knit community in Pacific Grove accepted and loved him dearly and wouldn't dare to think any less of him and his abilities. Unfortunately, outside of their home town he was often met with judgmental stares and awkward encounters. My mother recounted a time to me when some boys from out of town were staring at him as they walked home from school. My mother went right up to them and said "What are you starring at? I hope one day you look different and people stare at you!" She was always sticking up for Michael and looking out for him; bandaging his wounds, standing up to bullies, pushing his wheelchair up the hills of Pacific Grove, protecting him from pain while pushing him to achieve anything he wanted.

Being only 11 months apart, they were very close growing up and remained best friends for his entire life. Michael wouldn't have gotten as far as he did without the help of his sister, close friends, and family - despite him often believing it was better to stay hidden, he couldn't help but stand out.

Michael graduated from Pacific Grove High School in 1981, and was in the best shape of his life. He refused to use his wheelchair during school hours and used his crutches instead, he would balance on them without letting his legs touch the ground. He wanted to get stronger - he even used his crutches to walk the stage at graduation. He was determined to live his life like any other 18 year old boy. He lettered in sports by helping out as a track and football assistant coach and he even arm wrestled other jocks at lunch where he never lost a battle. Later in life, he reached an all time goal of benching 400 pounds. As it says in one of his favorite songs: no matter how many times he was knocked down - he always had the strength to get back up again.

As Michael grew into adulthood, he was diagnosed with Crohn's, an autoimmune disease that is a chronic inflammatory condition of the gastrointestinal tract. Soon after, Kim and Michael's mother passed away when they were 19, from breast cancer. He found himself more and more depressed. Due to the loss of his mother, his illness, and his undiagnosed Bipolar Disorder. Despite these challenges, Michael always bounced back - relying on many pep talks from my mother. One thing Michael wanted to do more than anything, was to play tennis, my mother helped him achieve this dream by going behind their father's back to teach him how to play. He was quite talented and helped form and strengthen the wheelchair tennis team at Monterey Peninsula College.

Later, he went on to win a Monterey tournament where he was the only individual in a wheelchair to compete. He finally allowed himself some recognition for his achievements - only because he felt it may inspire other individuals with disabilities.

After he moved out on his own, he worked as a 911-dispatcher and helped to save other's lives for a few years until he became to sick to work. In his mid-20s he had an athlete's heart attack due to the pressure his spine was putting on his heart and later had rods inserted into his back for support. Throughout his adult life, he had countless surgeries whether it was to treat his Crohn's disease, treat infections caused by the disease, or correct different issues that occurred from his Spina Bifida.

He was in the hospital at least once a year, every year after I was born (1994) and honestly I believed he was invincible. To me he was every super hero rolled up into one - which was fitting since he was obsessed with Marvel and DC comics (and all sci-fi) and aspired to be like Thor of Asgard (his favorite superhero). However, despite all of his medical problems his biggest obstacle in life was his own going battle with depression and mental illness. He suffered many years in silence - only telling my mother occasionally about the dark thoughts he had. He questioned his faith in humanity, he questioned his faith in himself - but he never questioned the faith he had in me. Though he never had his own children, he was like a second father to me, his best friend Chris' children (Anthony, Peter, and Chris) and to his dog of 13 years, Joxer (the mighty dog). He was my hero, even though he never wanted to be, and he was most of all a fighter until the very end. He didn't lose his battle - he won at every turn.

Most of all, he took pride in being an individual with a disability - he had a positive self-concept and identity. He wanted others to see that people with disabilities are strong, capable, and resilient. When going through his things after he passed this last March, I found a letter he wrote to a member of his wheelchair tennis team. In which he writes,

I love you Uncle Mike, with all my heart, and I hope by sharing your untold story others will understand what an honor it was to be a part of your life.

A special thanks to my mother for her oral history and pictures - without whom this blog would not have been possible.

References

Chumbawamba - Tubthumping [Video file]. (2009, October 7). Retrieved from https://www.youtube.com/watch?v=2H5uWRjFsGc

Crohn’s & Colitis Foundation. (2018). What is Crohn's disease. Retrieved from http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-disease/

Disability charity Scope UK. (2017). What is the social model of disability? Retrieved from https://www.scope.org.uk/about-us/our-brand/social-model-of-disability

March of Dimes. (n.d.). March of dimes. Retrieved from https://www.marchofdimes.org/

O&P Virtual Library. (1975, December). Thermoformed ankle-foot orthoses. Retrieved from http://www.oandplibrary.org/op/1975_04_041.asp

Oandp.com. (2006). Industry mourns orthotics innovator Thorkild Engen. Retrieved from https://opedge.com/Articles/ViewArticle/news_2006-03-21_01

Olkin, R. (2002). Could you hold the door for me? Including disability in diversity. Cultural Diversity and Ethnic Minority Psychology, 8(2), 130-137. doi:10.1037/1099-9809.8.2.130

Spinabifidaassociation.org. (2015). What is SB? Retrieved from http://spinabifidaassociation.org/what-is-sb/