Just A Thought

            I’ve been working on my book a lot lately.  Trying to, anyway, in between actually working and attempting a social life.  I’ve been rummaging through memories in my head.  Remembering moments I have forgotten and missed, and some I have forgotten and longed never to encounter again.  But if I’m going to show people my life, I have to show them all of the most important parts that have helped make me who I am today.

It’s unfortunate to have experienced certain levels of hurt.  To know you were once in a place so dark, no light seemed possible.  There was a time when I couldn’t understand why I was given this life, even with all the beauty around me.  I couldn’t see the changes I was making being who I was, because I was too consumed with fighting it. But I am a beautiful person with a purpose or two in this world, and while I would like to forget these moments, I know they would be better remembered to help others through their own.

Writing is a bit of a struggle sometimes.  One minute I’m hitting roadblocks around every corner, trying to find the right words to capture my readers; the next, I feel like I don’t have enough time to get a thought written down before it escapes me.  Or I’ll be right in the middle of one thought, when I have to write myself a note on another before I forget it.  It’s a huge undertaking, to write your life out for the world to see.  But I’m learning a lot about myself in the process.  And if I can help at least one person to accept themself and be proud of who they are, then it’s all worth it.

Finding My Voice Again

            My time as Ms. Wheelchair Tennessee 2012 was a year I will never forget.  I learned a lot about the Disability Rights Movement.  More than I already knew.  I learned more about the struggles and hardships that people with disabilities faced as part of their daily lives.  It was just part of living back then.  Just part of doing what was necessary to survive.  Until people spoke up.  Until people like Ed Roberts and Judith Heumann banded together and forced society to let them in. In that year as Ms. Wheelchair Tennessee, I found more of myself.  More of the past that makes my future possible.  And I discovered how desperately I wanted my voice to impact the present… to change the future for others in the same way Ed Roberts and Judith Heumann changed it for me.

            In March 2013 I passed on the crown, so to speak.  Bliss Welch became Ms. Wheelchair Tennessee 2013.  In so many ways, she is perfect for this role.  And I know she will make us proud.  But I would be lying if I said it has been a struggle for me these past few months.  I am still active in the Ms. Wheelchair Tennessee Organization.  I lend my skills wherever needed to help Bliss, and to help this amazing organization grow.  There was some time, however, when I felt a lull… a loss in my life.  I felt as if I had lost the ability to speak out.  As if giving up my crown meant giving up my voice.

            I started this blog in an effort to share my life with others.  To remain open and honest as a person with a disability, no more or less human than anyone else.  I thought I lost my voice these last few months.  But I was wrong.  I forgot the most important lesson being Ms. Wheelchair Tennessee 2012 taught me.  The title might have handed me the microphone, so to speak, but I had to be willing to speak into it and make some noise!  Recent events have reminded me of this, and I am raising my voice once more.  My apologies for the silence while I worked on some kinks.  I’m back!

A Moment of Disablism

            I have graduated with both my Bachelor’s and my Master’s from the same university. Each time, I chose to participate in the ceremony. I worked hard for my degree, so why shouldn’t I celebrate the achievement?! Now, it’s important to understand that I love my alma mater. The faculty and staff there are, as a whole, accepting and empowering individuals, who pushed me to excel and held me to high standards. I am extremely proud to come from such a diverse and welcoming environment. But even the most open place… the most accepting people… have their moments of disablism.

            On a beautiful Sunday in May 2010, I graduated with my BS in Political Science. The entire ceremony went perfectly for me. Three weeks prior to the event, I set up the necessary accommodations. I made sure there was a spot for me in the row I would sit in, and a lift to access the stage. My name was called at the appropriate moment, and I made it through shaking hands without someone grabbing my joystick and running me off the stage. It was one of the most rewarding experiences of my life, partly because the individuals in charge of access for the event listened to my needs and addressed them appropriately. They kept me informed and took my opinions and viewpoints under consideration. They not only accommodated me, they accepted me. Two and a half years later, however, I was not able to say the same.

            I graduated with my Master’s of Public Administration in December 2012. I began contacting the necessary people weeks in advance to secure my appropriate accommodations. Very little communication was received this time, due to the fact that those in charge dealt with me previously and had the general idea of my needs. I arrived the morning of graduation and was greeted by my faculty marshal. He walked me through how graduation would go. I would walk in with my peers, and take my seat. This year, I would be sitting on the outer end of the first row of the graduate section. I was told this would be the only change in an effort to keep the isle clear. I had no problem with this, and was told the rest of the ceremony would go as it had last time. I took this to mean that, when my row stood and began proceeding through commencement, I would join them in my appropriate alphabetical location. I would get out of line only briefly to ride the lift up to the stage in time for my name to be called. I thought I would exit as I had entered, with my peers. Apparently, I was wrong.

            Rather than provide me a seat in the first row of graduate students, I was placed in a row almost entirely by myself. My only companions were two professors and an undergraduate student in a power wheelchair. He was seated next to me instead of next to his other undergraduate peers. As the ceremony moved along, and it neared time to begin the march towards celebrating my degree, both my undergraduate companion and myself were whisked away to the lift. I was to wait there until my name was nearing. I was so irate with how we were being treated, but unable to advocate for our rights at such an inopportune time, that I almost missed my place. I walked across the stage. I shook hands and smiled brightly. Soon after, I noticed a gentleman in a manual wheelchair following the line amongst his peers, stepping out at the appropriate time to use the lift, and proceeding on. No special seating for him. I wanted once again to call attention to the moment, but I held back. The pomp and circumstance of the event must prevail, I told myself. Upon completion, I was shuffled out before my alphabetical place and left in a flurry of frustration and personal embarrassment.

            While no one may have consciously denied me my rights, or those of the gentleman sitting next to me, they failed in so many ways. Did I not deserve to be seated near my peers? Did I not deserve to participate in the procession to the stage? How did the gentleman sitting next to me view these blatant segregated moments? I felt like the step child that no one wants to claim. Even worse, I failed myself that day. I failed to speak up. I failed to stand out. I failed to advocate for my right to the experience. The people I looked towards to provide equal access to graduation discriminated against me and denied me my experience, perhaps without even realizing their actions. And I let them.

I tell this long story because today is Blog Against Disablism Day 2013. And I made a promise to myself after graduation to never remain silent again when I witness disablism. When we stay silent about it, we are participating in it. And I will no longer participate in accepting less than I deserve. I will educate. I will empower. I will advocate. Happy BADD 2013!

Awareness or Acceptance? You Decide.

            April is Autism Awareness Month. According to the most recent statistics by the Centers for Disease Control and Prevention, 1 in 88 children is diagnosed with an Autism Spectrum Disorder. There are months and days dedicated to a myriad of disabilities, all with the intent to raise awareness. There is even a month meant to raise awareness of disabilities as a whole. But a recent blog by a parent with a son that has Autism (What I learned from my autistic son) has pointed out a key word in the various awareness months: Awareness. For such a simple word, there is an important distinction to be made.

Merriam-Webster defines awareness as “having or showing realization, perception, or knowledge”. With every “awareness month” we make society knowledgeable about that disability.  We increase the perception of the disability.  But what more does that accomplish? Do people gain a better understanding of the obstacles we face? Does it stop them from questioning the accommodations we request, the actions we take, and the assistance we need in order to be independent? I’m sure these days, months, and weeks of awareness all open people’s minds to think about the various disabilities in a new way. Maybe they even think about it for the first time, or gain a perception they didn’t have before. But shouldn’t we want more at this point? Don’t we deserve it?

I was raised to look past how a person appears on the outside and focus on who they are on the inside. I was taught to accept differences and understand that normal is never attained. No one completely conforms to a certain type or standard. There are differences in all of us. They should be celebrated and welcomed because they play a part in making us who we are. They help shape our beliefs, passions, and ideas. Without differences, how would we develop; how would we innovate and create? I doubt life would be very interesting.

We are learning to accept people of difference races, religions, and sexual orientation, among others. We’re not perfect by any stretch of the imagination. Racism and bigotry still exist. Such hatred, ignorance, and intolerance probably always will. But if we can grow as a society to understand, to become aware of these differences between people… if we can grow to accept others for who they are, regardless of race, religion, and sexual orientation, why is it so difficult to accept people with disabilities? Are we less deserving of respect or rights?

The reality is that any of the groups listed above, and others not listed, can become a part of the Disability Culture. Having a disability can be genetic or acquired. But people fear the idea that they might become less of who they were. They view disability as a set back, a hindrance. They focus on the potential negative aspects and perpetuated stereotypes so much, that they forget an important point. We can choose who we want to be. Our dreams can change. We can adapt to our circumstances. Millions of people with disabilities do this and more every day. We hire assistants to help us get out of bed; we get tutoring or extended test time in college to reduce stress and distractions; we seek counseling and support. We recognize our obstacles and we overcome them, not because we are some special brand of inspirational heroes. Everyone has obstacles in their life. We do these things because our obstacles require it. We do these things to maintain our independence... to be successful and contributing members of the larger community.

            Awareness is important. I won’t deny that people need to learn about different disabilities and expand their perception. But I think we have also reached a point when we must accept each other and celebrate that. Acceptance of my disability… of who I am… of what being a person with a disability means to me, and the pride I take in it… that’s what I choose to focus on when my disability day/week/month comes around. What about you?

To Love, Honor, Cherish, and… Assist with Daily Living Needs?

             I am overwhelmed this week with the decisions being made by our nation and its leaders. The U.S. Supreme Court heard two cases this week on the legality of same-sex marriage. Reading the news reports and personal stories, I am reminded of the struggles people with disabilities continue to face in marriage equality. And I still cannot fathom why any government feels it should have the right to dictate the definition of marriage. Marriage is a declaration of lifelong love and commitment from one person to another. Period. I will love whomever I fall irrevocably in love with, regardless of gender. No one should get a say in that decision but my partner and myself. Unfortunately, as a person with a disability, I have the added burden of considering how marriage will affect my overall financial and healthcare needs.

            Having never been married (and still basking in the life of a Bachelorette!), I took some time to read articles recommended by friends on the subject of marriage and disability. What I read caused me to rethink the way I view marriage. A lot of people with disabilities receive SSI at some point in their lives. As a recent graduate, SSI is still my main form of income. If you get SSI and marry, however, there is a strong likelihood that your benefits will decrease or you may no longer be eligible. How much you make, and whether you still qualify, is now based on your combined assets. Apparently it’s easier for a couple to live on less income than would be required of an individual. Only the government would come up with such a theory!

            And if you think that’s bad, I haven’t gotten to the best part. In most states, eligibility for SSI means eligibility for Medicaid. For some, independence hinges on the personal care assistance Medicaid pays for. Private health insurance doesn’t cover assistance with daily living needs, so what happens when Medicaid is lost? How are people with disabilities suppose to continue living independently without the means to do so? Our partners cannot be expected to fill those needs on a permanent basis. I think I speak for a lot of people with disabilities when I say that being taken to the bathroom, showered, and dressed is just not sexy! Sure, I will appreciate my partner’s ability and willingness to assist me with such tasks when necessary, but relationships that cross into the personal care area too often, can be difficult and take away from intimacy and romance.

            Marriage used to be my ideal happy ending. As a hopeless romantic, I still cannot wait for the day when love sweeps me off my feet and I find my soul mate. As a realistic individual, I am now continuously made aware of the long road we face as a nation before the right to marry your true love does not come with penalties and fine print attached. I guess it all comes down to what I believe in. How hard am I willing to fight for my right to marriage equality? I’m proud to say I believe in marriage equality for all people. The right to marry affects us all. It's time we take a stand! What side are you on?

For more information on marriage and people with disabilities (explained way better than I ever could) try these links:

http://www.specialneedsalliance.org/the-voice/4/9

http://ici.umn.edu/products/impact/232/22.html

http://www.ssa.gov/policy/docs/issuepapers/ip2003-01.html