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In Defense of People Who Need Caregivers: Disability Should Not Erase Dignity

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Parents of kids with disabilities have an immense presence on the Internet. Not a day goes by during which I don't come across stories from their perspectives, often sharing the experiences of caregiving for their children. Some articles are filled with celebration, and others are written so that parents can commiserate with people who "get it." And I understand that. Anyone can attest to the fact that being a parent is the world's toughest job, and when a child has a disability, there's no doubt that a whole host of additional child-rearing challenges are involved. I know my mom and dad would be the first to agree that having a kid with a disability isn't always a cakewalk.

That being said, by no means am I claiming that parenting a disabled child is cause for misery or pity (because it's not -- a whole other topic in and of itself), but I have nothing less than the utmost respect for parents who ensure that a disability won't preclude their child from having the best life possible. It seems that Judy and James Lee, featured in an article from NPR, are just such parents.

I read the story of Judy, James, and their son Justin soon after NPR published it, and I wasn't initially struck by any signs of controversy. However, I followed the responses evoked by the article, and soon became concerned about one of the featured photographs in which Justin is shown wearing nothing but a diaper while being carried by his father. The debate surrounding this photo points to some incredibly complex disability issues that simply cannot be ignored.

So many parents have responded favorably to the picture, asserting that it's great to share such an honest look at daily caregiving responsibilities. And while I'm all about keeping it real, I cannot comprehend why so many people aren't getting what's wrong with showing the world a picture of a 16-year-old boy wearing nothing more than undergarment. First of all, parenting is caregiving by definition, regardless of whether they have a child with a disability or not. For children of any age and any ability, the care they need from their parents can sometimes be messy or personal; these are the moments to keep behind closed doors purely because it is the respectful thing to do to protect a child's privacy. There are tons of other ways to show the intimacies and dynamics of caregiving while treating Justin the way every 16-year-old young man should be treated. There are tons of other ways to show the love that James and Judy have for their son. Thus, I realize the point of the photo is to capture part of the daily routine of caring for Justin, but that in no way excuses violating his basic privacy -- even though his parents had no issues with it.

Therein lies one of the key issues: Justin's parents decided it was okay to expose their son in that way. His parents. Not him. I know they had no malicious intent, and they truly seem like wonderful people, but the fact that Justin is not physically capable of consenting to the sharing of such a photo is another major red flag as to why it shouldn't have been shared in the first place.

Some may argue that since Justin is a minor, his parents had the right to make such a decision on his behalf. While this is technically true, consider how the entire situation would be different if Justin was a 16-year-old non-disabled man instead. People would likely be completely outraged if his parents allowed a picture of him in nothing but underwear to spread like wildfire around the Internet. But because Justin is disabled, it's somehow okay? This is clearly a double standard.

Aside from feeling compelled to contribute to the largely shared perspectives of the disability community regarding the photo of Justin and his dad, the story resonates with me on a deeply personal level. While my disability does not preclude me from being relatively independent, there have been times in my life that I have needed far more than what may be considered a "typical" level of parental caregiving. For instance, when I was 17, I had cervical spine fusion surgery that required me to wear a halo apparatus for four months. Just months away from when I was supposed to be going to college, my recovery time meant I could barely do anything without help. From getting in and out of bed to dressing myself to using the bathroom, there was almost nothing I did alone. Had a reporter been covering my story (which actually almost happened), there is simply no way either my parents or I would have been comfortable allowing photographs of my most personal moments to be published. This is not just because, unlike Justin, I can communicate my concerns, or because the immense care I needed was temporary; it is because revealing something so private to the world is dehumanizing.

When we accept violations of privacy, such as the photo of Justin and his father, because disability is involved, we accept the notion that disability means less-than-human. We must remember that a person is a person, no matter their abilities. Everyone deserves to be presented to the world around us in a manner of dignity and respect.