It’s important to ALWAYS be inclusive. Because you never know who is watching. You never know when someone you love is going to need you. And you always want to be associated with unconditional love & respect, rather than hurt & prejudice.
I’ve had a few opportunities now to face life-changing diagnoses. The experiences are always huge, unique, & take time to absorb; but there are some interesting common threads that run through them all.
When you’re rocked with a new situation, (if me) after your initial reaction, you eventually try to establish stability within the chaos. And part of that process is establishing “What do I know?” What do I know about this condition? Who have I seen navigate similar circumstances? Where can I get the best information to build on? And yes… how have I seen the world react to individuals in this—now my—situation? How can I expect to fit into the grand scheme of things moving forward?
And to answer all these questions, you run back through your mind cataloging everything you can remember hearing about said diagnosis, trying to establish a foundation of facts, as well as expectations. Every connection you can possibly make to The New Thing.
Some of the most painful moments I have felt as a disability parent have come after the diagnosis, when I realize all the harmful perceptions that exist about my child’s new life. It’s amazing how they flood in. How I was swimming in them before, in blissful ignorance—heaven forbid contributing to toxic dialogue—but now, the blinders are ripped off. I see the prejudice, ableism, & ignorance for what they are. And it BURNS. That is one thing that makes becoming a disability parent SO terrifying: seeing your child so vulnerable in the world’s cruel eyes.
These messages can be overt, or subtle. “We just want a HEALTHY baby” is a sneaky one. Using the “r word” - less subtle. Some things you don’t even consider ableist… UNTIL.
Now that Lydia is diagnosed, & in my search for stability, I remember all the times people reached out to me to say, “Make sure you avoid XYZ so your child doesn’t get autism!!” Let me decode the subtle hidden messages in those statements, from a parent of a child with autism: “Autism is bad. I would never want a child with autism. Autism is to be avoided at all costs. Autism can be controlled. Good parents & families do NOT have autism.”
SO much education is lacking here, but beyond that, these messages are EXTREMELY toxic. This diagnosis was out of our control—the doctors focus on GENES. In addition, there is not a day since we knew I was pregnant that we have not made every decision with Lydia’s well-being in mind. And she is WONDERFUL. Now more than ever we need support. But where do we turn? Will it be to those who years in advance proved that they are willing to blame, fear, & be prejudiced against those with disabilities & their families; or to those who have demonstrated all along unconditional love for others & a willingness to learn & seek to understand?
My experience has been that by the time ppl need you, you’ve likely already shown them who you are & whether or not you can be counted on. We can always learn & change & trust can always be rebuilt, but that is a much harder road, & you are likely to miss CRITICAL opportunities to love & strengthen relationships that are important to you.
So watch your worlds. Be kind & inclusive & ready to accept & love, ALWAYS.
There are a lot of other scenarios this applies to as well. Food for thought.
