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Opinion: Despite frustrations, being the parent of a disabled child is a blessing

One problem is how people assume things about children by the way they look

SHARE Opinion: Despite frustrations, being the parent of a disabled child is a blessing
President Joe Biden marks the 31st anniversary of the Americans with Disabilities Act with artist Tryee Brown.

President Joe Biden hands a pen to artist Tryee Brown on July 26 after signing a proclamation celebrating the 31st anniversary of the Americans with Disabilities Act. July is Disability Pride Month.

Susan Walsh, Associated Press

On July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act into law, ensuring that people with disabilities do not face discrimination in their public lives, including the ability to get an education, get and hold a job, have access to transportation and to all public and private buildings that are open to the general public.

Because of the ADA, July is Disability Pride Month.

Color me naive, but I did not realize it was “only” 31 years ago that the ADA became law. By the time this law was signed, I had been the mother to a child with severe disabilities for almost two years.

When sweet baby Elizabeth — our second — was born in 1988, I grieved profoundly for what “might have been” for almost nine months. But I never questioned that we would parent her, even though a hospital social worker suggested we could place her in a home and let others care for her. 

In the 20 or so years that followed, my husband and I became parents to a number of children with disabilities, both through birth and adoption. Some of our children’s disabilities are readily apparent, like my son in a wheelchair, while others are not visible but just as serious.

It has become second nature to us to be the parents of kids with disabilities. We want the best for all of our children and we want them to do their best. Their varying talents, strengths and, yes, disabilities, have taught us to be flexible in our expectations and consistent in our support. And, we have had LOTS of practice parenting children with a variety of needs involving medical equipment, including wheelchairs and feeding tubes. 

One of our frustrations as parents has been the assumptions people make based on how our children look. We have an adult son in a wheelchair who has no intellectual disabilities (he’s a university student), but a recent hospitalization for him shone a glaring light on some of those assumptions.

Following some complications during surgery earlier this month, he needed his mouth wired shut and a tracheotomy performed, leaving him unable to speak. I stayed with him during the nine days he was hospitalized and was, frankly, dismayed at how many health care providers treated him as if he could not understand anything but the simplest of words — and only if they were said at high volume. He has no intellectual disabilities and no hearing loss.

Each time a new caregiver came into our room, I would introduce my son and say “This is Josh. He’s a UVU student. We’ve had some complications with surgery, but normally, he’s quite the conversationalist.” Only one time did a provider ask me when she walked in the room if he had intellectual disabilities as well as physical. Thank you, sister, for seeing my son and not just his disabilities.

Color me naive again, because I thought “we” as a society had moved past the times when people with disabilities were shunned and hidden away, that “we” accepted people with disabilities as people first, with additional needs second. Silly me. 

I was truly gobsmacked when a hospital social worker asked me two weeks ago why I had chosen to “take him home” when Josh was born almost 27 years ago. After all, we had places for “kids like that.”

Excuse me?? What in the actual Hades? And, this happened the day after a different social worker told us our son would be going to a long-term care facility. Lack of sleep and a lot of mama bear probably made my response stronger than it could have been, because I said “Yeah, that’s not going to work for us.” She looked shocked. I was shocked that she was shocked.

Now, let me be clear: caring for a child with disabilities can be extraordinarily difficult. Caring for an elderly parent with disabilities can be extraordinarily difficult. It puts immense strain on marriages, on sibling relationships and sometimes on extended families. If families are unable to care for their child or children or parents with disabilities, or become unable to do so as those needs intensify, we are grateful for programs and people that can and do assist families with their loved ones. 

Programs aside, there is still so much we can do to support those with disabilities and the ones who care for them. 

We can do more to shore up social safety nets. Sometimes that means legislation and public dollars. No amount of neighborhood bake sales will pay for the medical equipment and health care personnel needed for high-medical needs. But sometimes it also means giving mom and dad a break so they can have time together to go back-to-school shopping with nondisabled children, or have date night. Or take a nap.

It also means recognizing the extraordinary demands that can be placed on families with disabled members. Parents of children with disabilities often hear how strong they are, or even how blessed they are. That makes it hard to share the sorrows and even despair. Can we be better at being soft places to land for people who are grieving? 

We can do more to see people with disabilities. They are always people first. When I was in nursing school before I became a mom, we were assigned to spend time in a wheelchair and document how we were treated. I still remember what it felt like to be ignored, to have people talk over my head to my friend pushing the wheelchair and to talk about me as if I wasn’t there.

I felt the same way watching how people interacted with Josh this month. A disability does not change a person’s personhood, nor does it diminish a person’s value. That’s self-evident, right?

At the same time, it is most definitely not helpful to pretend there are no differences or disabilities, whether those disabilities are visible or not (hence the need for the ADA). Accommodations need to be made, and sometimes in ways we would not have thought about — like how do you put on socks if your knees don’t bend? Or have you ever realized how many homes are absolutely not wheelchair accessible? 

Our family doesn’t mind questions. In fact, we’d prefer questions to being ignored. Kids have a way of cutting to the chase, don’t they? “Why are you in a wheelchair?” they might ask, or “What happened to your fingers?” to my daughter who is missing 2 fingers on each hand.

No problem. We’re happy to talk about it. But I’m even happier when people ask “What do I need to know?” or “How can I best support you/your child/your parent?” And please don’t just ask once. The needs are often long-lasting and evolving. 

Being a mom has been and is the best, hardest thing I’ve ever done. Being a mom to children with disabilities has blessed my life in ways I could not have imagined 33 years ago. Huzzah for Disability Pride Month.

Holly Richardson is the editor for Utah Policy and has a diagnosed “disability” herself — attention deficit disorder, which she considers neither a deficit nor a disorder, just to be clear.