My Disability Doesn't Erase My Right to Privacy

Privacy is something most people take for granted. It’s an assumed right, one that seems unassailable. A given. After all, most folks have no reason to doubt that they can use the bathroom without someone monitoring them, make their own life decisions without someone trying to influence their choices, and do something as simple as eat in a restaurant without someone filming them and posting it online. But, for a disabled child (or adult), these rights aren’t a given.

The fundamental liberty of human autonomy is often denied to those like me. Since so many of us are dependent upon family members or caregivers to assist us in our daily lives, our hold on independence is a tenuous one. It’s very easy for even the most well-meaning of people to adopt paternalistic attitudes towards disabled people. They think by virtue of their able-bodiedness, they somehow know what is best, and by assisting someone with a disability, they claim ownership of that person’s life — that person’s story.

A few years ago, a news article and video went viral about a fast food employee assisting a disabled man with his meal. The wheelchair-using man entered the chain restaurant on his own, ordered his food and asked the cashier if he would help him with his meal. The cashier agreed. Using a smartphone, a bystander filmed the disabled man eating and posted it on the Internet. It went viral and was all over the news — with people calling for the fast food employee to receive a raise and an award for his community service.

When I saw this news story, I felt the red-faced-and-blood-pumping kind of anger. It was a classic example of what we in the disabled community call “inspiration porn.” You know those news stories that praise an able-bodied person for asking a disabled classmate to prom? That’s inspiration porn. The focus is on the goodness of the able-bodied person — not the disabled person’s life or perspective.

No one asked the disabled person at that fast food restaurant how he truly felt in that situation. How it felt to have his privacy violated in such a way. To be forced to ask a total stranger for assistance with his meal. No one asked why he didn’t have services that would allow him to have a trusted caregiver of his choosing to be there to help him. When the news media did deign to mention the disabled man, they said they contacted him and that he was grateful for the employee’s help. But what else was he supposed to say? They wanted to hear that the disabled man was grateful because it fulfills the requirement for a great piece of inspiration porn. Inspiration porn is contingent on our gratitude. We need to be grateful to the able-bodied for assistance. Grateful to society for helping us. And grateful for life itself. But that much gratitude is hard and exhausting to maintain.

This isn’t to say disabled people aren’t grateful. We understand that we receive and need assistance from others — and we are thankful and appreciative of it. That’s for damn sure. But the expectation of endless gratitude isn’t fair, either. With situations like this happening every day, it is understandable why it can very difficult for disabled people to assert their autonomy — after all, when you are dependent upon someone else for your very survival, the balance of power tips decidedly in the opposite direction.

This isn’t to say that all disabled folks lack independence or autonomy. Many of us do have it, but the numbers are far fewer than they should be. When we do manage to achieve fragments of privacy, it’s hard-fought and not easily earned. It takes a diligence that quite frankly can be exhausting.

When I was young, I was fiercely private. I was well aware that I was different than everyone else, so I was especially sensitive to encroachments on what I perceived to be the remnants of my autonomy. It’s normal for all parents, especially parents of a disabled child, to seek advice or vent about the stresses involved in caring for their child. It’s important for parents to have this healthy outlet. But when I caught my mother discussing me with other people, I would grow angry. I had little tolerance for my private matters being discussed without either my participation or my permission. These rare instances were probably the only times that I visibly displayed my anger and actually articulated why I was upset. It was tough for me to do that. When you’re so dependent upon others for help, it can breed a “need-to-please” mentality that is hard to break. I didn’t like confrontation and I didn’t like to disappoint others. So I would often swallow my frustrations for the sake of others’ comfort.

I was fortunate, though — my mom was probably more sensitive to my need for privacy than most parents. I am so thankful that I escaped childhood and adolescence before the advent of social media and smartphones. I’ve witnessed parents on Facebook oversharing details of their children’s lives to 487 of their closest friends. Details that, if I had been their child, I would have been mortified to know had been made public. While most of these parents have able-bodied children, I’ve seen parents of disabled children do the same thing.

I’ve seen parents posting photos of their disabled kids on blogs, Facebook, and other online public forums with graphic photos, videos and details about their medical condition, progress and other deeply personal things. While it’s understandable to seek support and guidance, be careful where you look for it. Find a private space, or a support group. Your 487 social media friends are people your child will perhaps interact with for the rest of their lives. Is it fair to your child if you disclose such personal and private information to people the child may see on a regular basis?

Just because you are their parent, that doesn’t mean you own their story. Or that it is your right to share that story with others. Rather, raise them to be strong and independent — so one day they will be the ones to choose how, when and if they wish to share their journey. Teach them to safeguard their privacy and autonomy like the treasure it is.

Back when I was in high school, there were two aides available to me when I needed to use the restroom. We had a set time that we’d meet at the modified portable restroom on campus. Once inside, we’d lock the door to prevent any students from entering when I was using it. The aides used the Hoyer lift to transfer me safely from my wheelchair to use the toilet. This lifting device has a small hydraulic hoist that attaches to a fabric sling I always sit upon. It’s an easy and secure way to help me move about.

During these times in the school bathroom, the aides and I would chat about our days and discuss various things — like how to place a maxi-pad on a pair of underwear to minimize leakage. Or how fast their adorable children were growing and how they’d soon be in high school like me. Or how it wasn’t weird that while sitting on the toilet, I liked to multi-task by eating a bologna sandwich.

One day during my freshman year, while in the middle of this bathroom routine, there was a heavy, authoritative knock at the door. Thinking it was a disgruntled student wanting to use this particular bathroom, we ignored it. But, the knock sounded again — impatient and eager. Then, an adult voice called from outside, “Let us in.”

It wasn’t a question, it was a demand. One of the aides quickly went to follow the request. When she opened the door, I frantically called out, “Who is that? Don’t let them in!”

In the Hoyer Lift, I felt vulnerable and exposed and didn’t want anyone to see me. I grew panicked.

I heard strange, female voices try to push into the door, “We’ve come from the county education office. We’re here to observe.”

Thinking nothing of this request, the aide began to back away from the door to let them in.

“Wait!” I squeaked.

Observe me? I wasn’t a specimen in a laboratory. I wasn’t an animal at the zoo. I wasn’t a fucking orangutan. I would not be observed. Like a tidal wave, I felt the anger rising that I only felt when my autonomy was threatened, “Why are you here?”

“We need to observe this for our records. We’ve come from the county.” These words were said in a way that made it clear they thought they were entitled to watch me empty my bladder. That my using the restroom was a matter for public record and review. Like a damn Senate Hearing on the environmental impact of cherry-flavored Kool-Aid packets on spawning salmon.

“Would you want to be watched while you are going to the bathroom?” The vulnerability of my position made tears tingle the tops of my eyelids. But, I would not cry. I wouldn’t. I took a deep breath, “Why didn’t you ask my permission beforehand?”

My question seemed to perplex them, as if the thought had never, ever occurred to them. And that upset me the most. Why would they need to ask permission? I was under the care of the county office of education, why would they need to bother? After all, they were the experts on what was best for me. Silence echoed in the bathroom, and I felt the scent of industrial toilet bowl cleaner tingle my nose.

“So… can we?” one of the women ventured, desperate to not waste the 40-minute drive to the school. Probably eager to get this done so she could tackle the foot-high stack of other student files on her desk.

“No,” I said, emotion creeping into my voice.

Seeing the moisture shimmering in my eyes, the other aide straightened her back and stepped around the Hoyer Lift to the door. Her normally friendly voice was clipped and short, “OK, we’re done here. Do it another time. Goodbye.”

After the door clanked shut, I did my best to not cry — my usual emotional reaction when I was upset. I clenched my abdominal muscles and pushed the tears away. I let anger flood in, “How dare they assume I’d be OK with that? Without asking me first? And they drove 40 minutes from the county office without informing me?”

I went on with my day and tried to not think about what had transpired. Embarrassed, I didn’t tell a soul, especially my friends. I wanted to fit in and be “normal” — and what teenager gets observed while she’s taking a shit?

Upon their dismissal from the restroom, one of the ladies from the county called my mother at home in an attempt to head off any potential issues. They informed her what had transpired and apologized if they had upset me. My mom replied, “It seems to me that you are talking to the wrong person. My daughter is the one who should have the apology. Frankly, if you had spoken to her to begin with, all of this could have been avoided.”

Later that day, I was pulled out of sixth period, and in the alcove outside the door, a lady from the county office began, “We’re sorry about what happened. It was our fault. We called your mom and she told us to talk to you directly.”

I wanted to burrow into the dirt by the pine tree a few yards away. I could hear the rustling crackle of the breeze slipping through the pine needles from that tree. Like that breeze, I feared her words would drift inside the classroom where the other students could hear them. And then what would they think? I wanted to get the apology over… as quickly as possible. I rushed out, “Just never do anything like that again. To any student. Just because someone is disabled, that doesn’t mean we don’t have the right to make decisions for ourselves. We deserve privacy too.”

“O—OK. Yes,” she agreed. “D—do you want to talk about this more? We can go somewhere to talk?”

I had no interest in discussing it further. Feeling my face flame in embarrassment, I shook my head, “No. No, I’m done. I need to get back to class.”

“All right,” she added, “Again, I’m very sorry.”

I shrugged it off and said a hasty goodbye. When I entered the classroom, I cast a quick eye around to see if anyone had noticed anything. Lucky for my frayed nerves, no one seemed to be giving me much thought. I felt the heat in my face cool and I eagerly got back to my worksheets.

I never saw that woman again. And no one from the county office attempted to observe me from that day forward.

Privacy? If only it were so simple.