This has been a tough academic year for many reasons, most of which have the underlying theme of coping with a disability that impacts communication. It has led me to think deeply about advocacy – self-advocacy and advocacy by others when they see something (a situation or behaviors) that should not be happening, particularly in regard to disability.
As a special educator, my mind follows this train of thought straight back to students and families that I used to work with in K-12 schools and those IEP meetings in elementary school years where tears were shed in frustration and anger of having to fight the same battles from year to year. And this was while their children were still in elementary school! As teachers in these situations, mostly we listen and try to say encouraging things. I distinctly remember one meeting where my personal empathy on this issue spilled over and I said that as an adult with a disability who has been fighting the same battles for years, I needed to share that it wasn’t going to end. Every new situation, setting, person, …. that we come in contact with runs the risk of making us fight the same battles all over again. And unfortunately, that doesn’t mean that it gets easier with time.
I had a conversation recently with a special education colleague whom I greatly admire and respect. She was sharing about a situation that had happened some years before, where she was working with individuals with disabilities in a particular non-school inclusive setting and the person in charge didn’t want those individuals with a disability to be included because it didn’t “look right” for the people who would be watching. My colleague stepped up – and basically said, “We can do a couple of options to help it look right, but s/he will be included. I will not tell them they can’t participate.” The critically important point here – she stepped up on their behalf.
From my perspective as somebody that most people would view as being a high-functioning individual with a disability, there’s a problem with the expectation of self-advocacy. Yes – I believe with all my heart that individuals with disabilities should/need to learn to ask for what they need. The problem lies in those situations when the asking has already been done, the accommodations have been provided, but there is still a need for the other person/people involved to do their part in order for accommodations to be successful. Forcefulness to make that happen in this type of situation can (and often does) put the person with a disability in a vulnerable position.
I know better than anyone who is trying to communicate with me just how hard it is to communicate with me. I have had more years and experiences than I can count that have taught me that if I say/do something that is going to put the other person on the defensive in regard to communication, then that relationship becomes damaged. Having suffered enough consequences to relationships (personal and professional) when I try to fix the issue, my coping strategy has become a review of the potential risks when making a decision about what to do. And I let a lot of situations go. I don’t need more barriers – even if they are invisible ones of underlying attitudes – than I already have to deal with in regard to disability. One of my former professors said to me one time that she knew that when push came to shove regarding advocating for my communication needs that I would walk away, instead of standing and fighting. For the most part, she’s right (although at the moment, I’m not sure how much more patience I’ve actually got in this regard). I have known people who stand and fight in every situation – and they are often viewed as angry individuals with a chip on their shoulder – and they are further marginalized because of this. Sometimes we need others to be willing to make the stand – either in themselves and their own behavior, or in helping someone else see where they erred.
I have wanted this blog to be a place where we learn about disability in all its aspects, even vulnerability. Please – as my wonderful colleague did when the situation warranted it – STEP UP when the situation warrants it. Reflect on and (if needed) change your own behaviors and/or help others see situations in a new light so that they can grow in their own awareness. Consider this when you interact with someone (anyone) with any disability in order to help them have a more successful communication exchange; reduce physical barriers and increase access; or help meaningful inclusion in life happen to a deeper degree. I believe in self-advocacy and I will do my part in regard to my own disability. I’m asking others to lend their voice and help advocate for the rights and personal value of all of us. I think I would consider this a disability version of the Golden Rule – Advocate for others as you would want them to advocate for you.
~ Dr. Laura King