The Gray Area:  One mother’s attempt to navigate the uncertain world between disability advocacy and reality

Let me start by briefly introducing myself: I am a parent of a 24 year old daughter with developmental disabilities. I am also a social worker who worked for 10 years in disability policy, and have long advocated on behalf of families such as mine who are caring for a child with lifelong needs.

There is a lot more to who I am, of course, but those two identities are at the heart of why I want to write this blog.

Currently there are fierce debates and, increasingly it seems, distrust and anger between family members of individuals with developmental disabilities, and the professionals who design and implement the disability service system.

I have found myself sharing the anger and frustration expressed by other parents (or at least some of them – there are divisions among families as well). I often feel invisible, unheard, misunderstood, and discounted by those policymakers who are entrusted to design the very system my daughter – and by extension, my family – relies upon to get through our day and, more importantly, will rely upon for the remainder of her life, likely long after we are no longer here to look out for her.

And yet, I was part of that professional world, and have sat at the table with policymakers as they debated issues and arrived at decisions. I know they are not bad people. I know for the most part they are motivated by good intentions, and a genuine concern to help. I also know that the constraints under which they much operate – resources, regulations, a wide range and shifting landscape of opinions and philosophies – are real, and nothing is as simple as it might appear from the outside. There are no perfect solutions, no decisions that don’t involve compromise among competing priorities.

If I am honest about my feelings, I know that even when I am most furious, deep down inside I get the other side, or at least I have a glimmer of understanding. I feel the need to dig down, examine this in-between space, pull out my contradictory and conflicting feelings and shed some light on them. I want to do this for myself so that I can better understand what I really think, and why. But I also want to share some of this thinking with others who might also be struggling with the realization that neither side of the debate is all right or all wrong, that they don’t want to be told “you’re either with us or against us,” that these are complicated issues that generate complicated responses.

These times demand humility, the recognition that none of us has The Answer. We need to do a much better job of listening to one another, absolutely, but we also need to do a much better job of listening to ourselves, our innermost thought and feelings, those doubts and inconsistencies we are most afraid to be truthful about.

Ultimately, it takes courage to admit to one another our uncertainties, all the things we don’t know, what we’re still trying to understand. We need to find a way to make it safe to share and receive each others doubts, and recognize that they aren’t signs of weakness, or even hypocrisy, but the reality of being human in an infinitely complex world.

I’m hoping this blog will be a helpful step in creating more honest, respectful, and compassionate dialogue.



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