What is a disabled parent?
I interviewed many people – from wheelchair bound, to blind, to chronically ill, to mentally ill, to terminally ill – and do you know what I found? I found NO disabled parents in Columbia, South Carolina. Seriously.
Let me explain.
For starters, when you call someone “a blind person,” you are defining the person by that one thing. Most people prefer to be called a person first, such as a “person with autism” instead of “an autistic person.” Why does it matter? Well, a parent who is disabled is NOT a disabled parent. Just because a person has lost a limb or organ or one of their five senses doesn’t mean they aren’t able to be a parent.
Recently, I went to Blowing Rock, North Carolina. I wanted to stand on the edge, but I couldn’t make it the same way as everyone else. It was important to me, though, so I found a way to make it happen. Even if I had to crawl, I was going to get there – so how much further do you think I would go for my child?
Likewise, if something is important to someone, they will find a way to do it. Including a mom who cares for her family despite having no arms! One of my mom heroes is a woman from the Myrtle Beach area. She may need a lung transplant, but that doesn’t stop her from mom-ing. People see her cart her oxygen tank to little league games and boy scout events. She might have a disability, but it does not make her a disabled parent!
In fact, many people I spoke to found their children actually gained something from having a so called “disabled parent.” For example, in a family with two parents without sight and two children who see, the children began to verbally communicate at a much younger age than a child with seeing parents. In their case, pointing to what they wanted wouldn’t work, so they had to learn to speak in order to communicate with their parents.
Their mother explained to me how their two seeing children know how important it is to answer right away if their name is called. This is so she can locate them in a group outdoors. They know to put things back where they go so mom and dad can find them. Sure, she may face challenges in her daily life we don’t all face, like not being able to drive, but she finds a way around that. Driving is not a vital part of parenting.
Just as some parents cannot physically see, we cannot always see how a parent struggles. As I know from experience, some illnesses can be “invisible.” Contrary to popular belief, things can be happening inside the body that aren’t visible outside. When I take up a handicap parking space carting my toddler into the library or grocery store, I’m not “cheating” or “being lazy.” I have limited circulation, arthritis, and lung fibrosis. An x-ray of my hands, feet, and lungs is all it takes to see the damage.
Having an autoimmune disease means the body is fighting itself. Not only can this be crippling or even deadly, but it also makes you tired, the same way you’re tired when your immune system is fighting the flu. For us, some days look different from others and our parenting style might change. However, children of a disabled parent can learn independence and perseverance earlier on in life.
One woman I know is a mom fighting with Lupus. Her kids call her super mom. Some days she can’t get out of bed, but she can still help with homework. On her good days, she works hard as a nurse. Her kids are considerate of others and know to take care of their health.
I spoke with one mother who is actually missing one of her intestines due to surgery. Her condition causes severe pain, and she has different diet and exercise regimes she must adhere to. On the outside, she looks like a hot, young mom. On the inside, it’s no joke. She’s missing parts of her body due to illness. She can’t do certain things with her kids; can’t always fight the mess of her house while juggling children, but that does not mean she can’t parent. She can protect them, meet their basic needs, teach them, love them. Maybe they do more indoor activities than she had planned or watch more PBS than some people would approve of, but she’s parenting. She gets it done.
Just like all parents, parents with disabilities need support, self care, and creativity.
We have limitations and physical challenges. All parents have to get creative; all people with disabilities have to get creative. We might need a babysitter, service animal, a child leash or an app to help us with daily tasks. But what we don’t need is to have our children taken by the government. Did you know that until recently DSS could remove a child just because the parents were blind? Many people have worked hard to change that law in South Carolina to protect parents who are blind. Now, groups are proposing that protection for all parents with disabilities. But the battle isn’t over yet.
Keep in mind, this wouldn’t mean parents with disabilities who are unable to care for their children wouldn’t be immune to the law, but could not have their children uprooted simply as discrimination against handicapped Americans.
Remember, under this vien of thinking people with a mental illness – one in five Americans – could lose custody. Victims of violent crimes and accidents have had to defend their right to parent after injury. Some people even reported those with cancer. People who can’t keep up with their kids due to age or weight could become at risk too.