It was pointed out to me that raising a child with a disability is unique in that the parent doesn’t usually share the disability, or have a disability at all.
In other groups, typically the parent(s) share in the characteristic. Baha’i parents know how to raise a child as a Baha’i. African American parents know how to raise an African American baby. Etc. People within the group know the practices, the cultural ins-and-outs, even the language.
But when a parent delivers a child with a disability, or the child acquires a disability later in life, there is a steep learning curve for parents who aren’t already in the know.
How does not participating in the disability color our advocacy? How do we know we advocate for the right things? Do we listen – truly listen – to the needs of the people for whom we advocate? Or do we just push for more services, more funding, more research?
As a mother, I can see from the outside how Down syndrome affects my daughter. I see the appointments, the therapies. I see her friends with Down syndrome, I see their parents. But do I really know what it feels like? Do I really know what it means?
Just something to think about, this person said. Just a gentle reminder to really listen to those living this life before we type out blog posts, shoot off emails, storm capitals.