We cannot segregate children like Hope away and pretend that it’s for their own good. We cannot force these children into a mold, but we must instead build a support system around each of their unique shapes. This was always the intention behind governmental disability protections, but our systems are falling far short of what our loved ones deserve.
I know it’s not realistic to support every cause, every time an awareness day or month pops up on the calendar, which is why INCLUSIVITY is the single most important mindset we can foster to make the work of caring for all people as streamlined as possible, without sacrificing the energy we reserve for our loved ones.
Hope is returning to NYC this September and this time, so are we!! You may register for the September 17th walk at anytime, but if you’d like to join team Strive With Hope, NDSS can only guarantee t-shirts if you register by Friday, August 12th.
As parents of these beautiful children, we understand something that isn’t always so evident from the outside: Down syndrome is a blessing. So let these kids into your classrooms, your studios, your camps, your programs, your sanctuaries, and if you’re lucky, you might just catch a glimpse of the magic. But you’ll never know if you don’t try.
I’m not going to justify the life of a person with Down syndrome, explaining chromosomes and how they give back to the community, and I promise to never ask you to explain or defend your child’s existence either. All I’m going to ask is for you to consider the possibility that raising a child with a disability is mostly about simply raising a child.
We throw around words all the time, using hyperbole to force others to understand in the flicker of a moment the feelings we have spent days, months, even years cultivating. We don’t always mean what we say, and parsing language can often be an exercise in futility.
This is an entirely new world that we’ve so completely absorbed it feels like we’ve had Down syndrome all along and therefore find it fairly unremarkable. We haven’t lost our identities to a diagnosis, or we have and I haven’t noticed.