Exposure Leads to Acceptance

Alex Mahoney lived around the block from me and was one of my good friends until 2nd grade when he and his family moved away.  I played often with him and his younger brother, Vinny. It wasn’t until I was much older that I came to realize that Alex had Cerebral Palsy and his brother had a learning disability. To me, they were just Alex and Vinny! I can still picture them both clearly – smiling broadly – in my mind. Alex had a wheelchair, giant green therapy ball and a physical therapist. All very cool to me! Vinny had difficulty talking – a speech delay – and he had big blocks with straps attached to his tricycle pedals to help him keep up on rides with Alex and me. We each had our own unique set of wheels. In my mind, I was just as different from them as they were from me… That was my normal and it was no big deal.

One of my fondest childhood memories is listening to my mother play the folk guitar. In fact, she taught herself and became so good at it that she was invited to play some pretty cool gigs. For many years, she played in every elementary classroom in our school district (a 3-day, non-stop singing and strumming gig), at east coast U.S. Naval  parties, in the “Combo Room” at The NY Met’s Shea Stadium (where she met Tom Seaver and Tug McGraw), as well as for the residents of numerous nursing homes and hospitals including the Veterans Hospital (VA) on Long Island. My siblings and I often accompanied her on these gigs. For me, the term “audience” meant people who listened to Mom’s music… regardless of how intact or torn apart, how old or young, or how healthy or sick their bodies may have been. At the VA we sang and danced and laughed with once able-bodied folks who’d become — in some cases, severely — disabled as a result of their service to our country. This was my normal.

And, dear Aunt Carol who lived with Alison and Kellie, two of my closest childhood friends, joined us for tea parties and played dolls with us many afternoons as I was growing up. She could be seen walking about our neighborhood with a transistor radio to her ear, listening to her songs and happily greeting everyone as she passed. And, Aunt Carol was no different than my cousin’s Uncle Stevie who lived with their family and played endless games of cowboys and Indians with us, when he wasn’t creating amazing sculptures. Both Carol and Stevie were mentally impaired; one was disabled from birth and the other became disabled as a young adult. Again, just my normal.

When I was 16, I accepted a “babysitting” gig. My job was to walk around town and be a companion to Johnny Dakis. Johnny was an 18-year-old boy who was born with Cerebral Palsy. Unlike Alex, he was completely confined to a motorized wheelchair and “spoke” using a primitive letter board that doubled as a tray. He was brilliant. We’d spend hours strolling around town discussing electrical circuits and motor components… Actually, HE spoke of such things (using his letter board) and I listened, trying desperately to keep up with the complex concepts he introduced. On our afternoon strolls, I argued our way into many a local store when locked gates or narrow doorways threatened to block Johnny from doing what everybody else did every day. I didn’t realize it at the time, but I was advocating for someone with special needs back then. I thought I was just hanging out with Johnny. Doing whatever we wanted to do and going wherever our wandering took us. Normal.

As a young adult, my parents divorced and my mother eventually married a man who happened to have been born with Cerebral Palsy. His parents did not institutionalize him, despite the common practice and medical advice they received when he was born almost seventy years ago. Obviously, his CP was not a big deal for his family, nor for my mother; it was also not a big deal for the rest of us. My Mom’s new hubby was amazed that she, and the rest of us, never saw him as disabled. He is just Richie! He walked until recently when he opted for a wheelchair, he drove until he decided his aging reflexes weren’t as good as they used to be, he worked until he retired, he talks (there’s no stopping him from that), he writes books, and he loves my mother. That’s all there is to know.

Thankfully, in my life, it seems I have always been surrounded by naturally-occurring disability. One of my girlfriends is dating a man named Jon, who was paralyzed from the chest down in a car accident. My friend Linda is hearing impaired. My college art professor had a malformed right arm and hand (he said it was his dumb luck that he was “born right-handed” LOL). My neighbor uses a walker due to arthritis. My sister had her hip replaced. Our high school janitor had his left arm amputated (and then adorned the stump with a “cut on the dotted line” tattoo). My friend Tammy had laser eye surgery to correct severe near-sightedness. I dated a boy who was going blind from a congenital disease. My friend’s son has a reading disability. Two of my neighbors’ kids are on the autism spectrum and another’s child had a nervous break down. One of my friends has Type 2 Diabetes, another friend’s child has Type 1 Diabetes, and two of my friends’ children have peanut allergies. And, I am overweight… and run really slowly… (no matter how fast I try to go)!

For me, there is nothing out of the ordinary about any of these situations.

ImageAll of these wonderful, differently-abled people in my life have molded me into the person I have become; the mother I am: In September, My Beautiful Boys – 7-year-old identical twins born with an extra 21st chromosome (aka: Down syndrome) – start first grade at our local elementary school, down the block. The same school where my mother once played her guitar. They will be part of a general education class with their typically-developing peers. They will share an aide and receive the supports necessary to achieve academic success. They have friends at school and in our community. They laugh, cry and show off their abilities just like everyone else. They are included.

Disability has always been a natural part of my world. A world made up of people with unique strengths and talents to celebrate, as well as weaknesses they each strove to overcome. I know from being exposed to differently-abled people that the value of a human being has nothing to do with what size they wear or how fast they run… or whether they can read, walk, hear or see at all!

We each bring something significant to the table. And, we all belong – living and thriving amongst our peers, contributing something valuable to our communities. Yes, by my upbringing, I am an inclusionist! I believe that people with special needs should be naturally included in all aspects of life – community, education and employment – not separated, segregated or institutionalized away from society, family, friends and peers.

This is my passion, my fight, my purpose. I do this for my kids, for your kids, for the neighbors’ kids and for everyone born differently-abled here in my little corner of the world. I do this for all the wonderful differently-abled people I met and all they taught me. It is my way of giving back to them and paying it forward for those who will follow in my footsteps.

This post was written for the Blog Hop hosted by With A Little Moxie on “The Influence of Disability.”


Here’s the Blog Hop!

1. My Liddy Bug @ blogspot. com | Visit blog
2. Lifes Little Surprises | Visit blog
3. Gillian Marchenko, The Tent | Visit blog
4. The Hailey Herald. . . What I “Thought” Before I had Hailey | Visit blog
5. Tricia@ AWKOL | Visit blog
6. Melanies Mania – Growing up. . .  | Visit blog
7. Ellie Bellie Bear -Ds Stereotypes & Myths | Visit blog
8. What makes Special Olympics so special? | Visit blog
9. The Ordinary Life of an Extraordinary Girl – We celebrate what down syndrome means to our family, friends and community | Visit blog
10. With a Little Moxie | Visit blog
11. My Stubborn Little Miss | Thoughts from NDSC | Visit blog
12. Our Cora Bean: The Influence of Disability | Visit blog
13. Down Wit Dat – “I Wish Id Known” | Visit blog
14. Life As I Know It: What Its Like | Visit blog
15. Violet and her first friend, Sam | Visit blog
16. My Life as Mandy. . . With Epilepsy | Visit blog
17. Perfectly Imperfecta: How to Have Disabled Friends | Visit blog
18. To Save Down Syndrome | Visit blog
19. Blessing and Bother: My Truth | Visit blog
20. Exposure Leads to Acceptance | Visit blog
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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in Advocacy, Down syndrome, Down Syndrome Advocacy, inclusion, Uncategorized. Bookmark the permalink.

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