What Being Paralyzed From Neck Down Taught Me About White Privilege
I want to share my unique position as a white privileged person, who is also a disabled minority.
Courtesy of the author America's political disparity seems to be at an all-time high right now. I'd say this happens after every four-year election cycle, except this time it feels different.
People have been spiteful and unkind to each other, more than ever before.
But instead of documenting my tears, I want to share my unique position as a white privileged person, who is also a disabled minority, living in our deeply diverse but underrepresented country, with hopes to awaken compassion and understanding for why all of us could benefit from using our privilege.
I broke my neck doing a trampoline stunt at Sea World Orlando back in the fall of 1998, just as I was peaking as an adventurous 20-something grabbing the world by the balls.
For the sake of time, I won't share any of the details of that catastrophic day, the months of grueling therapy to come after and years spent adjusting, but I will catch you up on what you need to know about me for now.
I am a 38-year-old former gymnast paralyzed from the chest down, with partial use of my arms, little dexterity in my hands, and not much to work with from the nipples down. For those who like medical jargon, I'm a C5-6 quadriplegic, sensory incomplete, which means I had no chance of any physical recovery, though I have regained some sensations over time (Not much, and mostly just pain. Go figure).
I've lived this way for the past eighteen years, and to make up for what my body cannot provide me, I use a power wheelchair daily so that I can participate in society as actively as possible.
Having a disability has taught me a lot. It's taught me to appreciate the little things in life, like beautiful sunsets and the touch of friends. It's taught me not to take one day for granted, as they are gifts, not promises. It's taught me how to be a better problem-solver and that anything is possible if you take long enough to think about how to make it happen.
Photo: Author
And uniquely, it's given me the perspective to understand the meaning of white privilege and its power by allowing me to see the world from a different lens.
As a white woman, I obviously cannot know what it's like to be a racial minority living in America. I do, however, know what it's like to be a minority trying to survive in a world not made for me (which is what unites all minorities given our country was founded and continually governed by mostly straight, white men).
Some of my personal challenges as a wheelchair user include avoiding stairs, dodging cracked sidewalks, searching for ramped curbs, staying clear of narrow doorways, finding sinks with leg room underneath, preferring tables that aren't too low, appreciating mirrors that aren't too high, using bathrooms that are too small, finding parking with enough space, remaining hopeful for elevators, even if inconveniently located, and then hoping the elevators are in service.
The list goes on and on. I'll call these microaggressions because they're not obstacles or problems that are necessarily life-threatening but more like small annoyances that become torturous over time. My husband describes it as "like death by a thousand paper cuts," which I find funny because it's painstakingly accurate (He's not disabled, although he understands because he's married to my adversity).
By now some of you must be thinking, "Hey! Not so fast. I thought we had laws for that!" And you're right. Twenty-five years ago the Americans with Disabilities Act (or ADA) was created to protect those with disabilities by legislating certain public property guidelines so that accessibility was more inclusive. However, it's also true that these laws only eased burdens, not resolved them completely.
I can attest to the overall shift for a more accessible world and its successes because I have seen and felt the changes over time (the ADA had only been effect for seven years when I initially became a wheelchair user, so we have grown together). But still, we cannot be complacent.
There is still much more work to do (ahem, New York City, I'm looking at you) because no matter what the size of a daily struggle when it's compounded over a lifetime like many minority microaggressions are, they become setbacks that further prevent equality and promote heart-wrenching despair.
Another way in which minorities are segregated are the extra responsibilities and social obligations that come with being "different." In my case, it's explaining my disability repeatedly each day, openly and pleasantly every time, even when I don't feel like it, because not doing so can be catastrophic.
As we all know, first impressions can define character, but I know mine carries even more weight — it will create or shape a world view of an entire demographic. So I must stay diligent and represent myself with care, always, if for no other reason but to ease future encounters for my fellow wheelchair users.
This includes being pro-active, taking time to field questions about political correctness, re-telling my origin story, educating curious children, constantly defining my personal space, communicating what violates that personal space, and doing whatever is needed to pacify the time or diffuse a potentially uncomfortable situation — for them, of course, not me (My feelings are null and void until their assessment of my character is over).
With that being said, I promote my disability without trying to create hyper-awareness or more sensitivity (because I don't mind sharing my life story obviously), but instead just to make my point that minorities are tasked in ways that others aren't. This brings me to the biggest insult of being a minority: flat-out rejection.
If you're a human being with a beating heart, you know nothing can be more violating than alienation.
There have been times I've shown up to a place, even after being personally invited and encouraged with a "you'll be fine" and "it'll work out," only to find out I wasn't fine (I became the center of attention unwillingly), it didn't work out (there were stairs galore), and then some in attendance became outraged by the lack of access (my literal representation of inequality and injustice, even if unintentional, can ruin a good time for all, even those not directly affected).
Isolation from a minority perspective is more than awkward, uncomfortable, or embarrassing — it can cut into the soul so deeply, it leaves scars in the form of anxiety and apprehension for next time. And there will always be a next time. Because that's what happens when you live in a world that doesn't reflect your perspective: your needs are left out and then you're chastised for it.
So that's why it's absolutely essential we look inside ourselves to find ways in which we are privileged, and then apply our privilege to others who are not. And if you happen to be a white, straight man living in America, this means using your privilege (and the fact that most of all government is represented by your specific perspective) to support, protect, and encourage all minority groups until our public offices reflect their voices, too.
Because to embrace white privilege is not to be insulted or told your problems don't exist, it's to acknowledge inequality exists. And we know inequality exists because imagine this:
Imagine I started a campaign dedicated to exposing the difficulties of living with a disability, a world much like I have described to you already. Imagine the inspiration of my campaign: a fellow wheelchair user innocently and tragically killed while crossing the street by a driver who denies any guilt and takes no accountability. I can see with my own eyes that this death was unnecessary. And I think about how easily it could have been me, not him.
Imagine my fear.
Imagine my passion.
Imagine my anger.
Imagine I call up my friends and loop them into my cause. Imagine we take to the streets, both real and virtual, in an attempt to create awareness — not only for this particular wheelchair user but for other wheelchair users as well — because we do not want another wheelchair user to die in vain and also because we want to create a tangible community to heal and grieve this horrific loss of life that has touched us so deeply.
Imagine how badly I want this message to be heard.
Imagine my heart racing, beating wildly and rapidly, every time I must cross the street.
Imagine me wanting to take action.
Imagine me wanting to scream louder than ever before, "Hey World! I'm here, too. My life matters! DISABLED LIVES MATTER!"
And then imagine, instead of acceptance or compassion or open ears or open hearts or open minds, I'm met with hostility and this disqualifying statement: NO. ALL LIVES MATTER.
It wouldn't happen. It simply wouldn't. But that's what happened to Alicia Garza, Opal Tometi, and Patrisse Cullors, the courageous and beautiful women who founded the Black Lives Matter (BLM) movement in honor of Trayvon Martin, a 17-year old black boy who was murdered for walking down the street of his neighborhood. And I find it unacceptable (because, of course, all lives matter; that was the entire point of the BLM movement, to begin with).
To put it in perspective, it's rare that I'm ever shut out or denied by the world without a heartfelt "I'm sorry," and so I consider myself one of the "lucky" minorities because at least my discrimination comes with an apology, unlike the others.
I can't fathom how other minorities survive this same world while also under attack by their peers, because frankly, I cherish the kindness of strangers. So, join me. Join me in using whatever privilege you can muster to show compassion when others do not. Because, after all, isn't it our American privilege to do so?
Jana Helms has been an author with YourTango since 2014.