Difficult Decisions

During Down syndrome Awareness month there are so many things we can focus on and talk about to raise awareness/acceptance.  We can start with the debate about those two words and whether pictures and happy stories do enough toward advocacy.  I think bringing attention to the difficult decisions parents are making every day does more than raise awareness, it can give people a glimpse of what it’s like in our shoes.  It can build empathy which can lead to changes in behavior.

NDSAM2014 One of the great things about social media is the ability it affords parents to reach out and get input about situations they are facing in that moment.   The many private and closed groups that focus on Down syndrome are hives of activity.  You’ll find everything there: questions about medical care, school problems, requests for product suggestions, and of course, sharing pictures of the loved ones we are so proud of.

You’ll also find desperate parents looking for advice on how to handle specific events of discrimination toward their child.  When something like this happens, our feelings are raw.  We all react differently.  Some shut down, some get angry, some cry. Everyone is aware that bigotry exists, but when we’re faced with it within our own community it can be devastating. We’re heartbroken for our child, ourselves, and the world at large that can’t seem to accept our beautiful children the way we have.

One such story happened today.  A beautiful 9-year-old girl was involved in a local gymnastics class.  She looked forward to it every week, excited to attend.  For parents, that’s a win-win.  When our children enjoy exercising and being involved in the community we are proud and excited for them.  The would-be gymnast had been attending the class for three months without incident.  Then, the unexpected happened.  First, Mom noticed a subtle change in the instructor’s behavior.  She was sure that she had seen him roll his eyes when he went to help her daughter.  When we see this kind of thing, we often doubt ourselves.  “Did I imagine that?” So, we can either wait, to see if it happens again, while our stomachs churn and we sit vigilantly watching, or we can react, perhaps cause a scene, and potentially embarrass ourselves and our child.  This Mom chose to wait and discuss the situation with her spouse.

Be a fan of respect

The next week, the owner of the gym approached her and let her know that the instructor had decided that he was spending too much individual time with her daughter.  It was disrupting the class and she would have to leave.  There was no discussion about accommodations.  No suggestions offered about other classes that might be better suited for the girl’s skill level.  Just this – don’t come back.

In that moment, I can only imagine what must have been going through her mind.  She was so stunned by his words that she could not react.  Instead, she waited a couple of days, until she had composed her feelings a bit, and then went to a place where she knew others would understand – the parents of other children who have Down syndrome on the internet.  She went for support and suggestions.

Within hours, she had over 40 responses to her plea for help.  Forty different opinions, from all over the world, offering suggestions on how to move forward.  Offerings ranged, as you would expect, from benign to extreme.  Walk away-or stand and fight.  We all have different ways of reacting to perceived injustice.  Recommendations included things like writing a letter to the editor of the local paper, and confronting the gym owner and threatening a law suit. Those people believe that every act of discrimination should be exposed and punished. That’s one way in which we can try to force compliance with existing laws like the ADA.

Another group offered suggestions for finding a more inclusive alternative, or a group specifically designed to meet the needs of people with disabilities.  Those people understand the possible repercussions involved in seeking punitive measures.  Forcing the gym to accept the girl may be considered a win for advocacy’s sake – but at what cost?  Will the girl ever be truly welcome there? Will resentment on the part of the owner and staff put the girl in harm’s way?  Will the mother then be labeled as a trouble-maker in her small community?  All of these concerns are expressed by members of the group.  The comments reflect an eerie history.  The voices of parents who have been there, done that, and found out the hard way what can happen.

A detached review of the interaction led me to understand how such events foster the notion of self-segregation within our community.  Parents start out believing in inclusion.  We’re trained by our support and advocacy groups on our rights from the time our children are born.  We have special times of the year that remind us to advocate for our loved ones.  We gather together to remind ourselves that our children are members of society and deserve to be accepted for who they are.  We’re encouraged to spread the word to the outside world.  So we dive in, heart first. We start out believing that if we expect it, inclusion will come.  We want so much for our children to be part of “regular” things: regular education, regular clubs, and regular social events.  We want them to belong to the same local community that the rest of our family enjoys.

This is Down syndrome in real life

When that doesn’t happen, we’re faced with a decision.  A painful, gut-wrenching decision.  Do we fight for what is right – teach our children not to accept bad behavior?  Or do we find a better place?  A place where people share our values and respect our children.   Several group members suggested Special Olympics as one such alternative.  For some, this is a perfect solution.  Special Olympics is known for its non-competitive sports that allow everyone to participate to the best of their ability.

Some would criticize that path as the safe or easy way out.  To some, accepting segregated communities is detrimental to the overall advocacy of people with special needs.

I have to wonder, how much those people have experienced real discrimination.  Has their child been hurt, physically or emotionally, by the bigotry of others?  Have they had to look their son or daughter in the tearful eye and explain why those people won’t let them play/don’t want them included?

I have.  Forcing a daycare provider to adhere to the ADA cost my son 12 stitches in his chin.  That is a scar that will never heal.  Oh sure, his chin is completely restored, but my heart and mind was forever changed.  I also had a good friend loose her son while he was simply exercising his right to be included the community.  Ethan Saylor lost his life in a movie theater.  It was his right to be there.  It was his right to have a personal care worker speak for him.  They are rights we fought hard for and won.  But asserting those rights cost him his life.

At this point, I have no answers.  I can offer insight into different perspectives – tell what I have learned from my own experience over the past 27 years.  But I cannot and will not judge another parent for the decisions they make in a situation like this.  I understand the desire to advocate and change the world.  I also understand the need to try to limit the danger in our child’s life.  I understand the toll repeated discrimination takes on the soul.  Anyone who is part of multiple minority communities is at a greater daily risk and has to take so many more factors into consideration.

As part of Down syndrome Awareness month, it is my hope that we can understand that each family faces their own trials and must make their own decisions.  We can’t possibly understand the nuances of their lives.

We shouldn’t judge their decisions; we should support their right to make the one that is best for them.

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