cut the red tape

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My son is 15 years old and loves to participate in sports.  We’ve learned the hard way that most sports teams don’t want him because he has Down syndrome.

Alas, true inclusion in recreation or sports has rarely happened in real life particularly as Aaron has gotten older.  One exception has been his high school, where he has heartily been welcomed in Physical Education classes and his teacher has embraced the modifications that he requires because of his bum knee, intellectual disability and short stature.  Hurrah for the inclusion champions at his school.

Outside of gym class, Aaron been pushed into segregated sports activities.  I’ve come to peace with this, despite my philosophical insistence on inclusion.  Inclusion to me means belonging in the bigger community.  Being ‘allowed’ to play sports with other kids who are segregated is not inclusion.  But it is what it is and it allows my kid to be active with a diverse group of people and so that’s a positive thing.

In the community, I’m not going to waste my precious advocacy energy fighting to have a team include Aaron if they don’t want him.  So he’s slowly been moved over to segregated sports and recreation programs like those at Challenger Baseball, Down Syndrome Research Foundation and Special Olympics.

Surprisingly, here in the segregated world, accessibility comes into play too.  There is a spectrum of ease of participation.  Challenger Baseball says – your kid wants to play baseball?  Come on in!  We don’t care where you live or what’s going on with you!  Just show up!   Down Syndrome Research Foundation says welcome to our Bollywood and Taekwondo classes!  Sign up if you can afford it (if not, you can ask for a bursary)!  You don’t even have to have Down syndrome!  These are good models and make it easy for kids to be active and have fun.

Now I pause at Special Olympics.  I know Special Olympics is a beloved institution so I’m going to get my hand slapped for this.  But I am going to say it anyway.

Special Olympics has grown into a massive organization. Along with growth comes bureaucracy. Accessibility for people with disabilities here is marred by red tape. Your athlete has Down syndrome?  He must get a controversial neck x-ray before he can register.  You live out of region and your local program is full?  You aren’t welcome on another team, unless you get approval from your home region to transfer over.  And then the transferring region has to approve you too. That requires having many forms filled out and then waiting and waiting, as my son has been doing for the past month.  He can’t attend practice until all the paperwork is done and the season has already begun.

Who loses in the red tape environments?  It is the kids themselves.

I will surmise when an organization gets too big, it drifts away from its grassroots beginnings and loses sight of the people they are supposed to serve.  It becomes about bureaucracy, policy, risk-management, staff/volunteers and rules, not the people themselves.  I’ve seen this happen over and over again with support groups and health/human services organizations too.  This is a darn shame.

This is particularly frustrating because I keep reading articles about how children with disabilities struggle with being physically active.  If we know this is true, why aren’t we making it easier, not harder for kids to participate?

I know that people working and volunteering for these organizations are well-intentioned.  I would ask them to pause and consider:  are your policies and rules causing additional barriers for people to participate?

If they are, I’d respectfully suggest it is time to untangle and take a good hard look at all your red tape. Who is this red tape serving anyhow?   Has red tape become a barrier for people to participate?  And is that okay by you?

Instead, let’s do what we can to let kids be active and have fun and never forget that sports and recreation is not about us adults.  Make it easier, not harder, for our kids to participate.  Help them find ways to be as healthy as they can be – and in the process, to find belonging and friendships too.

 

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