42. Never-Ending with No Closure Ever

Many years ago roadI entered into this disability advocacy field thinking I could have everything in control within five years. Yes, I mean everything.  As you may have guessed, I couldn’t have been more wrong . I didn’t really grasp the scope of what it was that I had dedicated my life to achieve.  Thirty-plus years after I became part of the disability community, it is sometimes rather heartbreaking to look back and see just how little progress we have actually made.

I know that some will argue that point, but if you look overall and not just at specific pockets of enlightened population, I am sure that you would have to agree with me.

In the big picture, I still see isolation, segregation, and discrimination as a daily part of life for individuals with disabilities. It is disheartening when all of the negativity that exists regarding disability surfaces with such regularity, so much so that society seems to have become numb in the acceptance of it.  “This is just the way it is.”  “It’s the way of the times in which we live.”  “It’s not my problem.”

Society as a whole misses the fact that the prevalence of disability is steadily increasing.  As you read this, the population of individuals with disabilities has grown as more children were born with disabilities and as other individuals became disabled as a result of a myriad of factors.  Currently, more than 15% of the world’s population have disabilities.  Washington Post Report

So do we realize the futility of somehow expecting a universal extinction of disability?  At what point do we address disability as being as inevitable as aging? What then, as the disability community, is the thing we can do?

That answer is: creating sustainable information and support networks that work together.

The history of the disability movement reveals that when we were all able to focus on the same outcomes of equality – and sustained the effort – the goals were achieved.  The inability to maintain a sense of unity long-term within the disability community has always remained the one frustrating factor I have faced.

The one saving grace I can see in all of this, is a paradigm shift away from this being the sole responsibility of mothers and becoming the responsibility of fathers as well. I recently attended a conference and was so thrilled to see couples learning together – not just an isolated few but many – and I do believe that is what has to happen.

Mothers and fathers stepping up and assuming the roles of leadership together may stem the tide and build a foundation for a new disability movement. This would double the effort and would only require that we change the way we think and inclusively look at the entire family, not just assuming that mothers alone must shoulder the burden of responsibility.

I have reached the conclusion that I will pass on, never finishing the work I have started. Despite the effort, it will just never be achieved in the time I have left. Of course I will continue to try to champion this cause which I believe to be so important, but I also know that it will take all of us stepping up and working cohesively together in a sustained manner to actually make a difference.

I see the young and energetic members of the disability community and I smile, knowing they are the future and that somewhere along the way I have made a difference, just as all those who will now follow behind my generation of advocates will make their marks.

This entry was posted in Advocacy, IDEA, IEPs, Inclusion, Parent Involvement, Parents Training Parents, Special Education and tagged , , , , . Bookmark the permalink.

One Response to 42. Never-Ending with No Closure Ever

  1. Lisa Fuerte says:

    Almost twenty years ago I had the privilege of speaking with Wilbur Hawke. It was a day I will never forget. I was lost in the maze of educational advocacy. As the mother of a child with a disability, I felt that my voice was small and insignificant. I never in my wildest dreams thought that I would evolve to be the advocate I have become. It wasn’t too long before I realized that I would be advocating for two children one with intractable Epilepsy and the other with Autism. Wilbur Hawke has been there every step of the way. He has been a mentor and a friend. I can honestly say I couldn’t have done it without him. My son graduated last year with his standard diploma and no one was happier for him than Wilbur. My daughter is in 10th grade and working towards her standard diploma just like her big brother and I know that Wilbur has been an integral part in her success thus far. This is my message to you Wilbur Hawke, You have made ALL of the difference in our lives. And while our lives may not be perfect we are much better off for knowing you my friend. Love and respect, Lisa

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