December 10, 2013

From self-advocate to advocate

As part of my MSW candidacy at the University of Denver I choose an internship with Valley Life for All. Valley Life for All is the organization I co-founded to promote opportunities for people with disabilities to participate in the community…not on the fringes.  To accomplish this we are partnering with (or planning to partner with) our local nonprofits, schools, recreation centers, housing authorities and initiatives to make sure including people with disabilities is part of all community conversations.

My internship is around inclusive education, what it is and how can we promote it in our community. In our years of advocating for Alex and her education I have learned what inclusive education is not, and I have seen pockets of what it could be – but this has only been the one-off situations.

From my perspective what is lacking is an overall philosophy of including people with disabilities in an environment where they can succeed academically, socially and emotionally. Too often we heard “we do not have the resources to do that” and not often enough did we hear “sure, let’s try it”. Our school systems are just that – systems. We need to help our schools rethink what inclusion really means and to me that means learning as much as I can about success and what that looks like.

To that end, I am in Chicago and will be attending the TASH conference for the next few days. Alex’s college, the University if Cincinnati and the TAP program will be presented and Alex was able to secure a ride with the Program Director who will be presenting. Alex has been successfully away from home over four months and we will fly home together on Friday….I can’t wait to see her. But I digress….
In my book I talk about self-advocacy and how it was and is a very important part of preparing Alex for the future. She has learned to speak up for herself and believe if she works hard she can accomplish whatever she wants. Case in point – college. By way of background:

According to self-advocacy as “ learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.
But is this enough? As the mother of a child with down syndrome I learned early that advocacy was the most important tool I had to ensure Alex was Alex first, not a person with down syndrome. As a social worker I know that when we label people we pull out all types of preconceived expectations of what people can and cannot do, and we don’t even know it. Our belief systems are so entwined with the color of our skin, our social class, our culture and our own personal experiences that it is almost impossible for people to change how they think or act. I have experienced this many times in the educational system.
So this brings me to the title of this post. Will there be a time for Alex to step out of the role of self-advocate and assume the role of advocate or even activist? Is caring about one’s self enough or are we all at some point obligated as human beings to go beyond ourselves and represent who we are in the wider community? After all, the civil rights movement and the disability rights movement were started by and successfully led by the people who were impacted, Martin Luther King and Ed Roberts, not their mothers.

I don’t know what Alex’s answer to this would be, nor do I know if she wants to become an advocate – or is she even capable of this role. But I do know that if I do not expose her to opportunities she will never be able to make that decision herself. I have signed Alex up for the TASH conference as a self-advocate. Will she yearn for more? I know that this will not happen overnight…..only time will tell. 

If you have not liked our page, it is a good way to stay on top of the ups and downs of college (and inclusive education) for a person with a development/intellectual disability. I have no idea what is going to happen....but I will share the good and the bad. Please click on "The Ordinary Life of an Extraordinary Girl" now.

1 comment:

  1. So great you are a MSW candidate. I'm interested to hear about the TASH conference


Thanks for your note, we love hearing from you!