~And the King shall answer and say to them, Truly I say to you, Inasmuch as you have done it to one of the least of these my brothers, you have done it to me. Matthew 25:40~
With the ending of Down Syndrome Awareness Month, I wanted to share some things with anyone who might care to learn. In 1985 I was introduced to Down Syndrome by a doctor in a hospital room who told us through an open door that we might want to consider not taking my little sister home with us because she probably wouldn't live to be 12 years old, right before he walked out of the room and left us in shock. For the past 25 years I've come to realize what a vaccum he was living in.
I am not going to explain about my life with my sister or about what Down Syndrome is or the ordering of the chromosomes. Those things do not affect how the person with Down Syndrome lives day to day. What I want to do is talk about other people in relation to Down Syndrome children and adults. What I want you to do is consider your family members and close friends. How many people do you know with austism or an autism child? What about asperger's syndrome? A cleft pallet? Near or far sighted? Deaf or hearing impaired? Stuttering? Manic depression? Post traumatic stress disorder? Asthma? Dementia? Alzheimers? What about ADD or ADHD? I'm willing to bet that everyone has at least three people close to them who are dealing in some way with the effects of one of those disorders. Have you heard the parent/child/spouse of that person shout in frustration? Cry? Seek out for help? Talk about doctors who cannot help? Teachers who do not care? Special Education directors who won't listen? Sleepless nights? Fearing they did something wrong? Wondering what will happen to their loved one if the caregiver passes on?
Take a moment to put yourself in that person's shoes. "My mother is so hard to handle now that she's in the final stages of Alzheimers." "What will happen to my son if his mother and I die tomorrow?" "Will the state come in and put her in a home or an asylum?" "Will she have what she needs when I'm not there?"
Those are things that any parent of any child can relate to, or any child of an aging or dementia parent. But did you ever stop and think of the not so traumatic thoughts that cross someone's mind, the day-to-day issues that make living so difficult? Issues like: will my child have friends at school? will he be picked on on the bus? will he be able to grow up and have a family and a job? will she be allowed to play with other children at the park? will anyone understand her? Imagine these scenarious and I bet you can recall in your own childhood, walking through the grocery store, standing in line at the bank, or anywhere you've ever been, witnessing one of these or even taking part in them:
* A child with a "hare lip" is playing at the park and other children are pointing and laughing with parents nearby who do nothing to stop it or educate their children on what is wrong with the other child, tell them that it is alright to be nice.
* A person with a walker or wheelchair trying to get up a ramp or through a door with fifteen people standing around and only one person attempts to help.
* The group of special education children at school come out on the play ground for their once-in-a-blue-moon play time with the other children and no one will pay with them, they all leave the slide when those children head that way, huddle together and laugh and pantomime the actions of the disabled children.
What have you ever done to stop it? And perhaps just as bad, what have you ever done to educate yourself or your children on life's hardships that are dealt to some people and not to others? If you have a family untouched by mental, emotional, or developmental delays then I applaud you for your perfect gene pool.
Have you caught yourself thinking, "I would like to go see Aunt Mary but she's in the nursing home and I just can't stand to be around those people. They creep me out." "Let's not invite them this year. Their kid has cerebral palsy and the other kids won't play with him. Better just to not have them here." "It's not that I don't ~like~ them, it's just that the one kid has that retardation thing and I just don't know how to act around them."
What I would like to challenge you to do is to really educate yourself. Educate yourself on bullying that goes beyond nerds and gays and kids with glasses. Educate yourself by doing something as simple as watching the world around you. On your walk to work, your day in the park, your Christmas shopping trip. Look at people. Look at how people treat each other and be aware of what is going on around you and in your own community, your own family and circle of friends. Consider how you would feel if you found out a friend was staying away from you because you had a child with Down Syndrome and they just didn't know what to say to you. If you see someone with Down Syndrome or some other visible disorder, smile at them, wave, say hello as you pass by. What harm has been done? They are like everyone else. Ask yourself what it is that you are afraid of, what makes you move to the far side of the aisle, why you quickly look away, or grimmace or snicker. Do not avoid looking deep inside yourself for answers. To know the world, you must first know yourself.
I challenge you to learn in other ways between this October and next. Glance at some webpages that explain exactly what happens during conception, gestation, or birth that causes different birth defects. That person you've been avoiding might appreciate the fact that you took the time to understand. Watch a movie that can open your mind and your heart to the realities. Read a book that can explain things to you, touch you, or entertain you. Really get to know the world around you, not just your own desires and hopes and busy lives. There is a whole world of experiences and until you have awakened yourself to the humanity flowing around you, you are still living in the dark ages, in a vaccum.
Movies, books, and parent/friend attitude toward people with disabilities can go a long way toward changing how people are viewed and treated in the future. Share these movies, books, websites, and ideas with children, family members, that parent you know who has a handicapped child and might need someone to reach out a hand to them, and especially with yourself.
Here are some movies, books, and ideas to get you started:
Books
* The Sibling Slam Book: What it's really like to have a brother or sister with special needs by Don Meyer-an unedited, honest, and non-PC book of what teenagers have to say about their siblings with special needs.
* Choosing Naia by Mitchell Zuckoff-the true story of an interracial couple from the moment they find out about their pregnancy, through diagnosis that the fetus has Down Syndrome, through their decision on whether or not to have an abortion.
* My friend Isabelle by Eliza Woloson-a story about a young boy and his friend Isabelle who has Down Syndrome (elementary level)
* Blind Justice by Bruce Alexander-18th century blind judge mystery
* Like Normal People by Karen Bender-fictional story of a 40 year old mentally retarded woman
Movies
* The Other Sister with Juliette Lewis
* My Left Foot with Daniel Day Lewis
* Mozart and the Whale with
* The Ringer with Johnnie Knoxville ( i know, but just trust me, ok? LOL)
* I Am Sam with Sean Penn
* The Horse Whisperer with Robert Redford
* The Memory Keeper's Daughter with Dermot Mulroney
Other Stuff
*If you know young preschool age children, this webpage has a list of activities that can introduce them to how life may be for someone with Down Syndrome. It's alright to laugh while doing these activities. They're meant to be fun! But take a moment to be serious afterward: Activities
*Look up your local ARC (Association for Retarded Citizens). They usually take donations of newspapers and things for recycling to fund their activities. Stopping by with a donation of your old papers once a month may give you some ease in being around the handicapped.
*Keep an eye out for your city's BuddyWalk, usually in October, and get the whole family out to walk to support Down Syndrome.
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