Visibility

When I was president of my college Alumni Association, one of the best perks of the “job” was having the honor of leading the procession during commencement. For four years I, along with the current president of the Student Association, was the first person to walk through the entryway when the band started “Pomp and Circumstance.”

Photo of two women wearing academic cap and gown.
Starting the procession of graduates at my Alma Mater made me visible – and gave me the chance to reconnect with former professors and mentors.

I gladly performed this task for several reasons. First, I enjoyed celebrating the achievements of the graduating students. Their energy and enthusiasm was contagious. Being a part of commencement made me feel better about our collective future. Second, being involved in commencement helped me build a stronger network of professional connections because I had the opportunity to further my relationships with former professors, colleagues and acquaintances.

However, the main reason I took part in commencement is because I loved the fact that all of guests, family and friends saw their graduates being led by a chick in a chair. It is estimated that over 5,000 people attended the ceremony each year. They saw me first.

Of course, they saw the faculty. They craned their necks and waved with glee when their graduate entered the arena. They quickly forgot about the woman in the wheelchair who was seated in the front row on the stage.

But for the first few minutes of the ceremony they saw me and my wheelchair. They watched me smiling as I approached the ramp on the side of the stage and then took my place to the left of the podium. They may not remember me now. But for a few moments, I was visible.

Since the United States House of Representatives voted to approve the American Health Care Act (AHCA) of 2017 (H.R. 1628) a few weeks ago, many people with disabilities have used the hashtags #IAmAPreExistingCondition or #IHaveAPreExistingCondition on social media to help gain visibility. Personally, I like the first hashtag because I agree that my disability is part of my identity. I would not be who I am without my disability.

Say what you want about hashtags, but in this age of social media they are a vital tool in gaining visibility. Salon.comAl Jezeera, and CBS News are just a few of the media outlets to feature stories about the #IAmAPreExistingCondition hashtag trending on Twitter. Even if you don’t agree with the rationale behind the hashtag, or if you think we’re all overreacting to political events – you see us!

People often ask me how to learn about disability. The best way to learn is to read and listen to stories from actual disabled people. I agreed to act as a volunteer co-moderator of the Disability Visibility Project (DVP) Facebook page because I believe we need to share and promote disability stories which are told by disabled people. Alice Wong, founder of the DVP, does a fantastic job of curating stories which constantly challenge my way of thinking. If you aren’t following the page, you should give it a look. I’m not just saying that because I am there frequently throughout the day.

It is important to me that I support other disabled voices, especially disabled people of color. Last year, Vilissa Thompson started using the hashtag #DisabilityTooWhiteAs Vilissa explained on her blog, “The hashtag forced me, and others, to discuss the elephant in the room – the racism, invisibility, erasure, lack of representation, and othering of disabled people of color.” As an advocate, I do not further our cause if I am not recognizing other people’s experience with disability and marginalization is different than mine. If I do not help change the representation of disability, I am not being inclusive in my efforts. People have called me out when I have not been inclusive, and I am grateful for their attention.

Some days, it is easy to feel invisible. We think our struggles or successes are not witnessed by others. We do our best, wondering if anyone really notices.

Yet every time I question if what I’m doing makes a difference, someone approaches me and tells me they have read a blog post or seen me at a protest or event. These little acts help increase visibility for not just me, but other disabled people as well. Hopefully these moments of visibility multiply when stories are shared, and help further reduce disability stigma and shame.

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To The Graduates

Dear Graduates from the Class of 2015,

In my area of the United States, this weekend is high school graduation. Just like you, many students are celebrating the conclusion of one era of their lives, preparing to embark on the journey to adulthood. My friends and I have shared memories from our high school graduation on social media – something not even imagined when we graduated from high school – and we have had fun commenting about experiences with commencement.

I almost didn’t participate in commencement with my class, but not because I was in danger academically. I spent my last year of high school as an exchange student in Australia, so I had a different experience at graduation than most of my peers. I had no desire to return home for the graduation ceremonies. My student visa did not expire until July, but my parents asked me to come home in June to graduate. My family and friends wanted me to be there. However, graduation meant nothing to me. In my head, I had already moved on. I had been living on my own in a foreign country for almost a year, and had no desire to participate in a ceremony celebrating completion of something I had already left behind.

In the end, I did return home in time to graduate with the other sixty four members of my high school class. I don’t regret being there for their celebration, but I do regret depriving myself of an extra month in Australia. It is one of the few regrets I have from the past twenty five years.

Now you are standing where I stood twenty five years ago. You probably think you have a plan. You imagine you know what will happen next. You have selected a college or university, or maybe you are going to leave for boot camp in a few weeks. Perhaps you have a job and you are ready to begin working towards a career. Or, maybe you’re afraid because you don’t have it all figured out yet.

When I was your age, I thought I had it figured out. I knew where I was going to college. I knew what I would study. I had a picture of what my dream job looked like. I was pretty sure I knew what I wanted life to be like when I “grew up.”

Guess what?

The world considers me a “grown up.” And life is nothing like what I thought it would be.

Looking back, the only part of the plan I envisioned to be successfully executed was college. I knew I was going to attend The College of Saint Rose, and I did. But that special education major which was to help prepare me for graduate school where I would study music therapy? Yeah – I knew within a week of classes it wasn’t for me. That dream job working with children with disabilities as a music therapist? It morphed into an amazing job working as a speech-language pathologist with geriatric nursing home residents. Who knew I would love “the old folks” so much, and find it rewarding to spend my time improving their quality of life? And that career as a speech-language pathologist? I never imagined I would want to leave it and begin one new career in my thirties, and then another new one just before turning forty.

Life doesn’t follow a plan. It is messy. It is full of surprises, opportunities disguised as difficulties, and second chances.

Life is not fair. It just is. It’s how you cope that matters.

You have so many choices as you start the next part of your journey. You will receive advice from adults, like me. Adults who are full of optimism for you, who remember what it was like to stand in cap and gown, ready to change the world, a little nervous about the future. I encourage you to listen to the advice, and store it in your brain for future use. Trust me – right now you are not able to predict when those words of wisdom will apply to you, but they will.

I did not receive much advice at graduation, but I received many words of wisdom the prior year before I went to Australia. The night before I left, I received the best advice from a dear family friend. It is advice which has guided me for twenty five years, and has helped me live without many regrets.

Say yes to life. Do it all. You never know if you’ll get another chance.

That’s it – say yes to life.

Be engaged. Get involved. Don’t miss an opportunity to pay a compliment. Hug your loved ones. Tell and show your friends how much they matter to you. Take a stand for those who need an ally. Volunteer for a cause you believe in. Say yes to life.

Graduates- the world needs your intelligence, your passion and your creativity. We are trusting you to share your talents and your treasure to improve your communities. We are hopeful you will make a difference in the lives of those around you. We are confident you will succeed.

Good luck – you can do it!graduation