Monday, November 22, 2010

Adequacy in Advocacy

Nearly a year ago, I wrote a blog post called The Inadequate Advocate.  I felt that while I am aware that there are endless issues in the Down syndrome and disability continuum that require strong advocates to help work through and raise awareness, I was unwilling to sacrifice the time that I felt it would take away from my family to do so.  I work full-time, and treasure every moment that I can spend outside of work with my family.  My daughter shouldn't have to know her mommy as someone that's sometimes there, because she's off attending sessions on the Hill (one of the guilts of living so close to the nation's Capitol) or somewhere else to provide solidarity in numbers in front of local or state government representatives, even if it's all in the name of Down syndrome awareness and for her benefit.  There are so many opportunities for this sort of advocacy, and peer pressure can be a bitch. 

But what I was not aware of at that time, and what became clearer to me from the responses I received to that post both on the blog and on Facebook, was that advocacy takes so many different forms.  Sure, there are people who can do that kind of advocating, but speaking out for her anywhere from school meetings to Facebook, putting together the DSANV calendar every year, writing this blog...are all ways to advocate for her, while refusing to compromise my first mission of being Samantha's mommy. 

Please watch the brief video below, where Martha Beck, a writer for Oprah Winfrey's "O" magazine and mother of an adult son with Down syndrome, talks about advocacy.  Wish I'd read this last year, but hope it helps those of you out there who may feel helpless every now and then.


Jenny said...

I LOved this!! Thank you so much for sharing!

Renee said...

You are a great advocate!

I have learned so much from you.

Melissa M said...

This is a great reminder. There are SO many ways to advocate. And the one I'm going to be the best at is showing the world that my daughter is loved and treasured just as much as any other child! I think that alone opens so many eyes.

Jenny said...

I just read your blog and I wanted to tell you how grateful I am that you posted it...I have learned more from that one little video clip and your words than I have through anything else I have read this past year. This is something I have been stuggling with for months now...Advocacy. At first I was scared to speak on Russells behalf because I was afraid I didnt know enough....Then as I have grown more confident in my knowledge of Ds I feel like I should ALWAYS speak out, and not only that but everyone else should too! I know its going to sound horrible of me but I hate to admit I almost judge other Mothers for not doing enough, or maybe not doing enough in MY books. This post really truly opened my eyes. From this moment on I will never judge or think badly or even question how another Mother approaches this issue. I pride myself on being very UNjudgemental too by the way so this is VERY hard for me to admitt too, LOL....anyway...I just realized through this post that by simply loving our children we ARE doing enough in the advocacy department....We are showing the world we love and value or children and we DO educate people when we can. And just because some choose to do it one way and others another doesnt mean any of us love our children MORE than the other person.
I sersiously feel like a changed person after reading your post, I know that sounds a little dramatic but its true, I just took so much away from it. I almost feel ashamed of the way I use to think...but what can you do, live and learn right?!!
Thank you so much for this.

Monica said...

Awesome post and great video clip. I read Expecting Adam 2 years ago and didn't feel a connection to Martha Beck in the beginning of the book, but by the time I closed it, wished I could meet her and Adam. This is a great reminder to me that I AM an advocate and do my part in my own way. There's no set formula for advocating. Thanks for this!

Anonymous said...

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