WHY WE DO IT

Advocacy Pic

I have been on the brink of burnout for a couple of years now. I’m exhausted. I’m stressed out. I can barely keep up with all of my obligations. I feel the weight of the world on my shoulders.

Most of us feel this way though, right?

The thing is, I could easily let most of my obligations go … I could, yet I can’t. And I only recently figured out why.

I’ve been appointed to my city’s Community Services Board, which oversees the use of funds and policies affecting those using mental health, intellectual disability, and substance use services. I serve on our School Board’s Special Education Advisory Committee. I am a mentor parent for our local Down syndrome association. I advocate for disability issues locally, regionally, and nationally. These are all volunteer positions that take up a lot of time. I am also a mother to 3 young children, married to a devoted father who works a lot of crazy hours, and I work from home.

All of this is simultaneously rewarding and draining. When I’m leaving my house for yet another meeting, I turn to the door to see my children screaming and crying for me to come back and my heart breaks to pieces. When I get to the car I sit and take a deep breath and remind myself why I am doing all of this.

I am doing this so new parents don’t feel the devastation I felt when my oldest son was born with Down syndrome. I am doing this so other parents don’t have to explain to their families why it’s not okay to use the word retarded during Thanksgiving dinner (or ever).

I am doing this so children with disabilities are no longer segregated in our schools. I am doing this so adults with disabilities can find meaningful jobs. I am doing this so my son and his friends can live independently and get married and live their lives just like the rest of us.

I am doing this so in the years to come, other parents won’t have to. I am doing this to make positive, lasting, universal change.

I am doing this so people with disabilities have the same basic civil rights as the rest of the citizens of this country.

So in the spirit of family involvement, I ask you, what are you doing?

 

 

2 thoughts

  1. There are so many reasons that I get involved at every opportunity … all that was listed in this article and more … the thing that is jumping to my heart and mind at the moment is that I do this so that parents & the community (and my own children) can see the endless possibilities for everyone of every ability level. So that they keep learning to look at and find ways to make things happen instead of thinking or accepting that something is not possible … because anything is possible when you have the heart, the vision and even just a little bit of creativity.

  2. I had to fight to get our daughter into a fully inclusive kindergarten class. They wanted to put her in a class with 7 other children with disabilities ages k-5. I know this class works for some, including a friend of mine. But shouldn’t it be “plan b” for a child just starting? I think this type of thing is why the state of VA ranks #41 when it comes to inclusion. http://cfi.ucp.org/state-scorecards/

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