One Thing I Wish We Within the Disability Community Would Stop Doing Today

Every day I turn on my computer I am met with the same thing.  In one form or another someone is presenting a blog aimed at telling people a list of things they should not say to someone who is disabled, or to a parent of a child with disability.  They get passed around quickly, eaten up with that comradery people crave so deeply.  They are haphazardly added to the list of good reads one can easily relate to, but I think they can be more harmful than good and here is why.

As a young woman with multiple disabilities and the mother of several children who also live with multiple disabilities we are no strangers to the off color and sometimes hurtful comments strangers and even friends and loved ones can make unintentionally during conversation.  There have been plenty of times over the years that I have been left in tears from a well-meaning person who just did not know better when they offered me an earful of what they thought was positivity and support.  It is true that people who have not shared similar experiences often miss the mark without even realizing they are saying something that could be potentially damaging to your feelings, and of course it hurts.  It is only natural to want to fix that for the masses and to save someone else in similar shoes from experiencing that same scenario.

Even if I have agreed with all of the items on one of the notorious lists of things not to say, I can only think of one occasion that I have actually shared one with friends.  The particular post was pertaining to grieving parents and it was all down right common sense and words that most of my grieving friends had trouble finding themselves in all of their pain.  It was written with an emotional appeal as to why a grieving parent truthfully could not handle hearing certain clichés and written from a very raw perspective thankfully many will hopefully never have to face.  Many of these lists, however, whether the author has intended for them to or not, have an accusatory undertone and really widen the gap between those with disability and those without.  They often contain a lot of “you” statements and instead of explaining the emotional sentiment behind not being able to hear certain comments, they call the reader out for their mistake and shame them for making it, with their negative undertones. 

Where this becomes the biggest concern to me is the fact that we as a community are trying our best to bridge the gap.  We are always trying to remind others that we are the same despite our disabilities.  We spend our time preaching about how we wish that people would ask questions instead of acting uncomfortable around us, we ask that they make normal human conversation instead of pointing and staring, we plead that they don’t leave our children out of activities that everyone else is invited to.  How are we going to succeed in any of those areas when we are constantly writing open letters containing lists of things they shouldn’t say, or do, and giving them the concern that they need to walk on egg shells around our families? 

I am not in any way saying that I disagree with what these lists are suggesting people don’t say.  For the most part I have agreed with about 75% of them and have been hurt by most of those very statements unintentionally.  My concern is that these types of pieces are setting us back in what we as a community are trying to accomplish.  They are all but demanding people tiptoe around us when we should be allowing them to learn through openly spending time with us and giving them the grace they deserve when a social error is made.  

I have not been disabled my whole life, and there was a point where I was somewhat uncomfortable around people who had disabilities.  It wasn’t because I felt there was anything wrong with those afflicted by disability, but I was very afraid of saying or doing the wrong thing.  I was curious about their differences as well as had a strong desire to befriend them just like anyone else, but I remember a huge anxiety burning deep inside of me that I would say or do something that would hurt their feelings, because I simply didn’t know what to say.  Reading a post such as “Ten Things to Never Say to a Child with Special Needs,” that had inflammatory and sarcastic undertones would not have helped to ease my anxiety at all, it would have caused me to clam up and give up.

Just as powerful as “you” and “I” statements, I feel these posts would be much more effective at getting their point across if they gave examples of what to say or do and not what to avoid.  There are always going to be those no matter what who are going to hurt you without meaning it, and some who just don’t care.  For those who do care, let’s show them we care by not treating them as if they have already done something wrong.  Telling someone not to do something naturally causes people to take a personal inventory and be unnecessarily alarmed that they may have done something to hurt you already, which isn’t fair.  Instead let’s give them the tools they need and the grace they deserve to truly be the friend/ family member you are hoping for.