Farewell and Thanks

Published on August 26, 2009 by Jennifer Laviano

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It’s hard to believe that in the space of just two weeks, the disability rights movement has lost two great warriors:  Eunice Kennedy Shriver and Ted Kennedy.  And yet, it’s fascinating to consider the very different, and yet essential roles they each played in the movement.  As I reflect on their passing, I can’t help but consider how this brother and sister represent so well the powerful force that families of individuals with disabilities can have.

Every day, relatives of children with special education needs fight the injustices and discrimination they see in their schools and their communities.

Eunice Kennedy Shriver’s willingness to discuss sister Rosemary’s intellectual disability openly while their brother John was President was, for the day, an important first step towards bringing disability out of the shadows.  When you consider that she did so at a time when families were made to feel ashamed by having relatives with disabilities, her actions were truly courageous.  Her founding of the Special Olympics predated the passage of the Education for All Handicapped Children Act (the predecessor to the IDEA) by nearly a decade.   One has to wonder whether Congress would have mandated special education if it weren’t for Eunice, refusing to allow ignorance about individuals with disabilities to prevail.

Trying to change attitudes is a huge part of the battle, but it doesn’t end there.

And this is where Ted Kennedy comes in.  Since its enactment, the federal special education laws, and virtually any piece of legislation that has impacted children or adults with special needs (he sponsored the Americans with Disabilities Act), have had an unshakable ally in Senator Edward Kennedy.  Every time the IDEA comes up for Reauthorization, those in the special education advocacy community brace themselves for the battles that naturally come with political debate.  No matter what your politics, however, if you care about the rights of those with disabilities, all disabilities, you owe Ted Kennedy gratitude.  His unfailing commitment to the civil rights of individuals with special needs has sometimes been the only thing to stand between us and disaster.  He will be sorely missed when the IDEA next comes up for Reauthorization.

Charity. Praying candles in a temple.

But you don’t need to be from a powerful family to have power.

Most of the parents I speak with and represent feel overwhelmed by the task of taking on “City Hall” when they have a dispute with their school district.  I can understand why.  The power imbalance is obvious, but it does not have to be permanent.  Parents who are willing to learn about, and ENFORCE their rights do not just create positive change for their own child, but they let school districts know that they can not act with impunity.  Even when parents take on the system and lose, which of course happens, they have sent a clear message about accountability.

Knowledge is power.

One of the biggest obstacles, in my opinion, to genuine equity and acceptance of individuals with disabilities is that most people don’t think or care about it unless it has touched them personally in some way.  Many parents who I represent have acknowledged to me that they never even considered the issue before their own child was diagnosed.  I understand that.  Really, I do.  But I don’t accept it.  And neither should you.

How can you change it?

Look, I understand that many families are not in a position to even hire a special education attorney, let alone fund full-blown litigation.  That’s one of the reasons I write this blog, to give families information and empower them, even if they can’t obtain legal counsel.  So I’m not going to suggest that everyone out there reading this open their doors, Network-style, and yell that they’re “mad as hell and not gonna take it anymore!” as they head to their State Departments of Education and file for Due Process.

catching the baton

If parents remained involved in special education matters even after their children graduated or moved on, it would be a good start.

I know that many of my clients fantasize about the day when they can officially have no relationship with their school districts ever again.  But part of the reason that we are continuing to battle many of the same issues, year after year, for over a generation now, is that the most experienced and vocal parents eventually move on, and new families are starting the process from scratch.  School districts have some administrators and staff members who have decades of experience with IDEA disputes, and yet most parents are networking with other parents who have only a few more years’ of learning the process than they do!

Help shorten the learning curve.

So today, in honor of Eunice and Ted, please pledge to continue to care about special education issues, even when you don’t have to any more.

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