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Teenagers

            I read an article today about sibling’s of children with disabilities being more likely to struggle with relationships, school, behavior, etc. The full article can be found at http://www.huffingtonpost.com/2013/07/31/siblings-kids-with-disabilities-_n_3682881.html. It got me thinking about the relationship I have with my own sister. As the older sibling, it’s difficult sometimes to find balance and acceptance being a strong, independent role model, while also requiring help with basic daily living tasks. Especially when the help sometimes comes from my younger sister.

            My sister Kaitlyn is thirteen. As a baby I would sing her to sleep and help change her diapers. As she grew up, though, she naturally noticed areas I struggle in, and began to offer her helping hands. It’s sweet, how innocent and non-judgmental kids can be. For Kaitlyn, as I’m sure it is for other siblings of people with disabilities, the help I need is a normal way of life. I love that she has accepted my disability so naturally. I love that she is the one person in my whole life that has never once questioned my abilities or inabilities. But I hate what my needs sometimes do to our relationship.

            I do my very best to limit how much I ask of Kaitlyn. She’s only thirteen, after all. But more often than not, she is home before anyone else. And only qualifying for a few personal assistant hours a day inevitably means I will need something from someone else during the day. I try to think of everything while one of my assistants is with me, but I never remember everything. As a result, I ask whoever is home at the time for a little help. Unfortunately, sometimes that’s Kaitlyn. And sometimes, she acts like many teenagers do when asked to do something they don’t feel like doing.

It’s hard for me to ask Kaitlyn for help. I know she doesn’t really want to be putting my shoes on, or opening things for me all day. And I know that, as a teenager, she probably wants an older sibling that more closely resembles those of her friends. Not being able to give her that, we get in some pretty hefty arguments from time to time. More often than not, they all stem from my impatient nature, and her teenage mindset. In the end, we both acknowledge our own shortcomings when it comes to having patience with one another. She knows I will only ask for what I need. I know she doesn’t resent me for it. And, regardless of what the future might hold, we will always be sisters. 

Another One Bites The Dust

            I received another rejection email from a job I interviewed for.  That’s a total of over 100 jobs I have applied for since December.  It’s only the second request for an interview though.  I’m not sure if that makes it better, or worse.  I don’t think anything can make being rejected feel much better in the moment it happens.  It sucks.  I’m being passed up once again, because I have all this knowledge and no practical application of it.  No real experience of any kind where employment is concerned.  It seems impossible to get any, if no one will allow me the opportunity to gain some.

            Another company called me last week to schedule an interview.  I go tomorrow.  Not sure if I really want the job.  It does not require a Master’s degree or any real experience, theoretical or otherwise, so I doubt it will push me and allow me to grow as a professional.  I’ll most likely spend my days answering as many phone calls as is humanly possible in a 9 to 5.  But it’s a paycheck.  It means I’m one step closer to a down payment on a van.  A chance to have my own place again.  Independence.  I have to get the job first, so I refuse to hold too much hope just yet.

            We’ll see.

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!

Spring Cleaning

            As an adult member of my household, I willingly contribute funds to pay the monthly bills.  But I want to contribute on a more physical level as well.  I want to do dishes and mop the kitchen; dust and vacuum the living room; load and unload my laundry.  As an independent person, I want to tackle as many chores on my own as I can.  Or at least attempt them.

Today I had the opportunity to try my hand at some vacuuming.  I actually managed to accomplish a good deal of it on my own.  Every now and then the cord would get stuck to my tires and I’d pull the plug out.  This would prompt my mother to unwind me and plug the vacuum up again.  Then off I went once more.  The whole ordeal took me about 30-45 minutes, and I strained my left hand so much it swelled slightly.  But I did it my way and I got it done.  I was high on a sense of personal physical achievement I haven’t felt in a long time.

I was intent on doing more, which led me to ask for the broom with the adjustable handle.  I can be a bit of a neat freak when I get on a cleaning spree, and we had some cobwebs above the front door.  I wanted to attempt to reach them myself.  But my attempts were cut short.  “The broom is too heavy” I was told.  “You’ll knock everything down”.  Would I really?  I’ll never know, because I was never given the chance to try.  I was heart broken and truly hurt by my mother’s inability to let me try.  I probably would have failed.  The broom is extremely heavy for me.  But I wanted the option to fail.

I can certainly understand my mother’s caution.  A heavy broom in the hands of someone who can barely lift the weight of her own arm, trying to swipe away cobwebs right next to a stack of boxes and a side table would probably make anyone with common sense think twice.  But the moment of vacuum triumph followed by the averted dusting disaster got me thinking.  I may find that I can’t dust the cobwebs or load and unload laundry.  As a person with Muscular Dystrophy, there are not many chores I find myself physically able to do, and I’m ok with that.  What I’m not ok with is the inability to make the choice to try.

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!