Accessible Voting

By: Andrew Bowen

Research shows that people with disabilities face numerous barriers to voting. While barriers to voting can't be removed in a matter of days, there are steps that can be made to ensure that the 35 million Americans who have a disability and are eligible to vote are able to successfully cast their ballots. Polling sites are required by federal law to have at least one accessible voting machine for people with disabilities, including those who are blind or visually impaired. The machine has to guarantee the same access, privacy, and independence that other voters expect when they cast a ballot.

People with Disabilities in Civic Society 

Advocacy by people with disabilities has been successful in changing policies and programs, most of which are organized by the disability rights movement. The use of adaptive technology is another vital strategy that empowers people with disabilities to connect with government. James Dickson and Kathy Howell, Co-Chairs of the Voting Rights Committee at the National Council on Independent Living are both people with disabilities. When asked to describe the problem of voting access from her perspective, Howell said: “Basically just imagine in all probability you wouldn’t be able to get into polls, you wouldn't be able to access web voting data and information. Imagine being treated like a second class citizen.” When Kathy spoke with Representative Jim Langevin (D-RI), he said, “If there are barriers to voting, then those barriers need to be eliminated.” Congressman Langevin, who became a quadriplegic at the age of sixteen due to an accident, shared similar stories of problems he encountered: “There were a couple firsts to my voting experience. The very first time I voted, I voted by paper ballot because I didn't think it would be possible to get to the poll and vote on my own. A couple of years later I said I want to go to polls like anyone else. But when I got there, at the time we had the oldest voting machines in the country. I had to take someone in the voting booth with me.”

What are Possible Solutions?

Two suggestions that were additionally mentioned by Howell were to follow Australia’s model of voter registration. In Australia, every citizen is automatically registered to vote when they turn 18 and people have to opt out, rather than opt in. Secondly, she also mentioned that several European countries have made Election Day a holiday so that people can focus solely on voting and ensure they can make it to the polls. Moving our elections to the weekend, with several days before of early voting, is another option. Michelle Bishop, the Disability Advocacy Specialist for Voting Rights at the National Disability Rights Network said. “We know how to solve these problems. It is high time that we as a nation actually do solve them.” 

If you will need use of an accessible voting machine, contact your local district and let them know.  They will need advanced notice, to ensure the equipment is there and working in proper order.

More to Give

          Bare with me on this one as I try to convey a mindset.  As a person living with a disability, I have encountered an odd situation.  Am I really an inspiration to others?  I’m just trying to get through life like you, just need to do it differently.  This “inspiration-porn” as it is often called, people looking at someone with a disability and trying to justify it in their minds.  Sometimes even saying to me something along the lines of “I couldn’t live like that.” or “How do you do it, go every day and not be discouraged?”  Sometimes followed by “I’ll pray for you to walk again.”  Gee thanks, $50 would really do more for me, but whatever makes you feel better.  First off, I have my struggles just like you and everyone else.  Secondly, how am I really supposed to respond to those comments? 

          I’m competitive.  Always have been.  As a new patient following my diving accident in 2005, it’s a mindset I developed.  It can always be worse.  Can’t use my fingers, at least I can move my arms, that would make things tougher.  Can’t walk, this wheelchair certainly makes it easier to get around.  No sensation below my injury level, better than constant pain or being perpetually un-comfortable.  There are any number of ways in which our individual circumstances could be worse.  So what keeps me going?  A stubborn personality accompanied with motivation to keep going. 

          I too find inspiration in other people.  This brief clip from an E60 report hit home for me. Cliff Devries Birthday Dive

Whether they have a disability or pass along unique insight or experience for motivation.  They typically have some common threads such as refusing to quit and giving more because they had more to give.  A few of my personal inspirations are former Navy SEALs David Goggins, Adam Brown, and Marcus Luttrell.  The books Fearless based on Adam’s life, and Lone Survivor based on Marcus’ gunfight and survival in Afghanistan, will pop into my head whenever I’m struggling.  Giving me an internal monologue of “keep going and I have more to give, give it”.  They have been through more difficulty than I have and are still here.  I highly suggest reading those books and seeing what determination can do for a person.

          Knowing/learning about your body is essential.  Don’t put yourself in dangerous situations or scenarios, but pushing yourself to do more is a powerful experience.  A way to build self-confidence and develop goal setting.  The building on myself is what has the biggest impact.  The ability to know what can be accomplished and also not being afraid to fail, as we are not going to meet every challenge.  Failure can be just as equal a building block as success creates.  

So the next time that things aren't going as planned or you are struggling, look inside yourself.  Is there more to give?  We have the ability to decide.  #Awareness

          Looking for a way to manage the upcoming days of Grey and the ensuing Winter Time Blues that Michigan brings over the next several months?  Ever try getting involved with adaptive sports for people with disabilities?  Michigan State University has an Adaptive Sports program that offers an opportunity for people to try adaptive sports.  People with disabilities that wish to try, can simply show up during one of their weekly open gym sessions.  There, people with disabilities are getting active in tennis, ping pong, biking, rugby, floorball, bocce ball, and more.  Whether you are interested in team or individual sports, or just looking to be more active, the MSU Adaptive Sports program is a great opportunity for experimentation and free of charge.  Plenty of student volunteers are there to assist getting adjusted or into equipment, working with you towards your goals, or to compete against as you play.  The atmosphere is relaxed with enthusiastic students and loaner equipment available for you to experience. Equipment such as sport chairs, arm bikes, or exercise equipment and more are already there for people to use or if you have your own to bring, that is welcome too. 

          When you are there interacting with other people, it creates a nice escape from daily life with a disability.  You are simply another player on the team or someone that is getting exercise.  No other label or stigma.  In this safe environment you are able to leave your daily life and escape into an activity.  It’s a totally different feeling when you are no longer in the minority and are among peers.  As a person with a disability, whether it is true or not, it can feel isolating to enter a room full of people.  As if the entire room stops and you feel their eyes follow your every movement.  However, enter a room of others with similar disabilities and nobody looks twice.  Unless you have some sweet gear or a service dog.  Then you may get a second glance, but it’s out of jealousy and wanting what you have, rather than curiosity at the oddity entering in the room.  When I go to a rugby tournament and the wheelchair users easily outnumber the non-chair users, it’s a different dynamic.  I’ve heard the comment several times how it is different to have the roles reversed.  There it is a gym full of people in wheelchairs and the people walking are in the minority for a change.  Then the true gem is going outside and checking out the parking lot.  All those people in wheelchairs had to get there somehow and had to park somewhere.  The parking lot is typically a nice mix of angled parking and double spaced to allow for all the ramps and lifts in vehicles. 

          Adaptive sports aren’t just about getting active.  It allows for real-life conversations among your peers with disabilities too.  You realize you are not alone.  Another large benefit to getting into adaptive sports is the ability to learn from others in similar scenarios.  Asking and watching what other people do to make their lives easier, as those of us with disabilities know, that everyday life things can be hacked for better.  How do you…?  What about…?  Where did you…?  Equipment, sex, food, social life, aides, travel, school, work, activities, or anything you are comfortable with speaking/sharing, are important pieces to enjoying life and who better to speak with than those living similar lives?!  #Awareness

There are many things an average person will want in their lifespan like happiness, to meet a partner, or landing the dream job.  Or if you narrowed it down to the person specifically, maybe it would be wants of good health, being a good friend, or going on a trip. Will those wants be the same between an average person and a person with a mobility disability?  Probably pretty similar for the most part.  Now, if they switched and wrote wants for the other person.  What do you think would be at the top of the list for the disabled person from an average person?  I bet I know. 

Walk again. 

There is an obsession by people with the ability to walk to think that’s all that matters.  I get it.  That’s all you know.  The ‘Abled Life’. Yet, when I talk with other people with SCI, walking is often far from the top of their list.  Talk to Quad’s and Para’s popular choices are:

These lists will vary depending on the person’s length of injury and also their injury level.  But, notice where walking shows up on the list.  At the bottom of Paraplegic’s want list.  In the long list of things we can get back, our walking legs typically isn’t the foremost thought.  For the most part, anyone using a mobility device can get through the day.  What we want is simply to speed up our day and make it easier overall.

Another aspect I never thought of prior to my injury were social norms and how they may be impacted.  For you men out there.  How were you taught for a good introduction?  Walk up, look the person in the eye, introduce yourself, and give a good firm handshake.  Something along those lines?  As a Quad, shaking hands is something I hate.  Simply because I can’t shake hands.  Instead, I’m extending the dead fish attached to my wrist for the person to awkwardly hold.  Plus, looking up at people all the time gets old.  Especially you really tall folks, would be nice of you to find a chair or take a knee if we have a conversation.  Just a little common courtesy for the next time you encounter someone in a chair. 

Daily life in a wheelchair is not as bad as everyone imagines.  No, it is not the ideal scenario and likely never crossed your mind as a possibility.  However, there’s no going back and life goes on.  You will quickly notice how UN-accessible the built environment is, have to wait while people take the big stall in bathrooms or the accessible parking space, but things can always be worse.  Day-in and day-out, no matter what is going on, the lack of ‘normal’ hands is by far the hardest/most frustrating part of Quadriplegia.  EVERYTHING takes longer and the likelihood of dropping something skyrockets.  That’s why I don’t have nice things, I have dropped everything.  At least now I have the #Awareness of knowing my limitations when holding items.  In fact, it has probably been a good couple of hours since my last drop so I need to wrap this up before the laptop takes another tumble down to the ground.

Welcome To My Life: The Oh-So Typical Cerebral Palsy Edition

Living with Cerebral Palsy, I am recognized as such: The Girl with Cerebral Palsy and more often than not, not for who I am as a person. Allow me to save you an awkward introduction with a plethora of explanations that you don’t need: My name is Madison, I am a twenty-one year old, caffeine-addicted, concert-attending bookworm who happens to have Cerebral Palsy.

Now, if that isn’t exactly what you are looking for, allow me time to explain what you probably, truly, want to know: I was born three months premature simply because I wanted to grace the world with my lovely presence a little earlier than planned. Because of this, I was naturally a pretty small kid; two pounds and one ounce, to be exact. Because I was so tiny, getting oxygen to my brain was a task similar to climbing Mount Everest as a few-day-old baby: I couldn’t. With that being said, what followed is what I call The Stroke, capitalized not only for emphasis but because according to family and friends that was the moment that turned things on its head. I had a stroke due to that pesky lack of oxygen to my brain.

What usually happens with strokes in children is medical professionals do not know the effect it had until months later, when the child is developing cognitively and is a bit more mobile. It wasn’t until a check-up that doctors asked my parents, “Does she favor one hand over the other?”

“Yes, definitely her left,” I’m assuming they answered, unknowingly.

They were then informed that children my age don’t have a dominant hand, thus explaining the after-effects of the stroke. What followed was realizing my right eye needed surgery and my right leg wasn’t quite right either. I’m sensing a theme…
           

 As I grew up, my “limitations” were increasingly apparent, making everything from getting dressed in the morning before school to cutting up food for lunch a little harder than it needed to be. Now, twenty-one years later, I’d like to think that I have pretty much overcome what was daunting growing up. I have two college degrees and a full-time job, I can drive a car, and did I mention that I am a fully-independent adult? I’m doing just fine.

With that being said, there are one million things that I have yet to discover. This blog is being used, in part, to facilitate a conversation about a necessary topic: Living with a disability. I hope that by reading this blog and reading my thoughts you feel welcome to share your stories, struggles, and triumphs. Most of all, I hope this blog helps its readers realize that you are not a disabled person, you are a person with a disability, living life like everyone else.

Until The Next Adventure,

Madison

Back in April 2019, the Disability Advocates of Kent County hosted their inaugural launch into Absolutely Accessible Kent.  An initiative to bring together the disability community with those involved in building design.  Resulting in a room filled with Architects, Designers, and Builders gathered listening to a glass ceiling shattering, world renowned Architect, Ileana Rodriquez.  Ms. Rodriquez has already earned global recognition utilizing Universal Design in her projects.  Ms. Rodriquez is so sought after, the country of Kazakhstan specifically contracted her to design their first fully accessible building.  She has done consulting in countries such as Japan, Germany, and Peru to name a few.  If that wasn’t impressive enough for you, how about throwing in that she is in a historically White Male profession as a Cuban born female that due to an Arteriovenous Malformation in her spinal cord at age 13, she can longer walk and uses a wheelchair for mobility.  After relocating with her family as a teenager to South Florida for better medical opportunities, Ileana joined her high school swim team and continued her education going on to graduate from Florida International University with a Bachelors and Masters in Architecture.  Still not enough for you?  Ileana set a U.S. record in the 200 Breaststroke and is also a former Paralympic Swimmer, representing the United States at London in 2012. 

All of these global accomplishments and accolades and she hasn’t turned 35 yet. 

With a high caliber of information and experience in Universal Design, but limited time, some of the key takeaways I have are as follows:

• 1.   Education is important all around.
• 2.   Who has a seat at the table?  Missing input?
• 3.   Design. Plan. Design.
• 4.   Not if, but when this happens.

Education cannot be stressed enough.  As a society we can help each other.  Architects and builders have their technical backgrounds, but they may not know what is best for people with disabilities within their buildings.  It is important we do our part to share information on what is needed and beneficial for full inclusion and access.

When discussing a new project, where are you getting input?  Who is giving the input?  Who is your target?  Heard from them?  Who is not at the table?  Should they be?  Has this been done elsewhere?  If so, what did they encounter and would they do anything differently?  These questions need to be asked, and more than once.  Re-evaluate to check if the answers change.  If not, what changed?

Beginning design matters the most.  If designed poorly or the information is not clearly followed correctly there is a greater chance of coming back having to re-do.  Taking more time, money, while upsetting both workers and customers.  Plan accordingly by talking with all parties to be involved.  Design the project around these factors.  Design to help all people instead of just a few (ramp to be accessible aside from main entry)

Lastly, don’t think “If ….happens I will get…” think “When….happens I will have…”.  It just makes sense to think long term.  If you think of what you will need in the future and what accommodates those needs, design/plan and make it now.  When the need arises, accommodations aren’t needed.  They are built in because of the knowledge you used, and in the end it just makes sense.  Make changes for the long term benefits and uses by all people.  #Awareness

I can still remember when he came in the room.  “That was unexpected, but he should be able to help me.” were along my first thoughts.  Yet he hadn’t said a word.  Then he asked all the same questions, did all the same checks and tests on me, my answers and results hadn't changed from before, but I had a new hope.  This guy should be able to give me helpful information and guide me through this disaster. 

Dr. Scelza had my attention and curiosity the instant he rolled into the room.

I was a freshly injured quad within my first month of inpatient therapy.  Dr. Scelza was in his Residency working with Spinal Cord Injuries at U of M, and is paralyzed and a wheelchair user himself.  At 20 years old, this may have been my first interaction with someone with a visible disability in a prestigious job.  Absolutely was my first since getting injured.  Didn't see any others zooming in and out of rooms and down the halls anyway. 

A great article in New Mobility Magazine about Doctors with disabilities brought these memories back.  The article emphasizes the need to have people with disabilities involved in our health care needs, as they have a deeper understanding of everything entailed with our disability.  Not that people without disabilities cannot do the same.  However, having someone involved in your care that has experienced it themselves provides an instant credibility.  Such as telling you that using one type of suppository over another can speed up a bowel program.  Not that those that walked in before didn’t have the same information, but advice carries different weight when it comes from a relatable source.  I mean how common is it for non-disabled people to use various suppositories in search of what works best???  I haven’t heard of that homework assignment during Med School.  Although, maybe they should…fits well with sharing in the full experience of what their future clientele experience.   Next time students try to experience paralysis by using wheelchairs for a day, go the full extent.  They need to do a suppository bowel program, use a catheter to pee all day (also forcing them to find an accessible bathroom and hope someone isn’t in the one accessible stall), go shopping in a clothing and grocery store, out to eat somewhere they haven’t been, and try to find parking spots.  All the common areas where struggles occur.  Goes well with not asking others to do what you haven’t done yourself.  Right?!

Dr. Scelza isn’t likely to be rolling into too many of your lives, considering circumstances of my intro to him, but his impact can carry on.  As more and more people with disabilities take on new and interesting careers, we are out more in the public eye.  We have a chance to be that informational resource or inspirational light of possibility for others.  We can expand the influence out into every work field.  Not just within healthcare. 

How many scenarios have we been in that including the disabled community from the beginning could have avoided??  Just because you haven’t seen or heard of somebody with a disability in a job/career doesn’t mean anything.  As we continue to knockdown barriers and follow our passions, simply being out there for others to see can be helpful.  Similar to any other project, the involvement of people with disabilities from the beginning is important (cough cough... housing continually built inaccessible). If nothing else, we make others aware how helpful engagement with the disability communities early on provides long term benefits and reduces unnecessary struggles or re-do’s for all people.  #Awareness

What’s in a name…?

It goes by multiple names such as Rugby, Quad Rugby, Wheelchair Rugby, or Muderball, I had my very first exposure to wheelchair rugby back in 2005.  I was 20, freshly injured and at U of M doing inpatient rehab after diving into shallow water and crushing vertebrae in my neck; severing my spine, and becoming a C-5/6 Quadriplegic.  Someone brought in a video for us to watch called Murderball.  A documentary following players on the U.S. Wheelchair Rugby team and discussing their personal history from injury, to playing on the team, and life as a person with a disability.

        For those of you that haven’t seen or heard of Quad Rugby, it looks chaotic.  Eight people in funny looking, tank-like wheelchairs rolling around on a basketball court with a volleyball and bashing into each other.  For the most part you aren’t wrong either.  Whenever I describe it to somebody; I typically say that it is a mix of basketball and football rules, played in bumper cars, on a basketball court.  It’s pretty fast paced and wild.  Our one qualifying and universal characteristic is that each team member has some form of impairment in all of our four limbs.  That is the one qualifier to becoming a Quad Rugby player, you must have an impairment in all four limbs of your body.  The majority of the players are Quadriplegic’s typically varying from C4-C8 Spinal Cord Injuries.  Although there are many other types that play, such as people with Cerebral Palsy, amputees, or other degenerative diseases.

        I’ve been playing for almost two years now and have been able to take a few things away from my experiences so far.  First is the great community of players from across the country, all welcoming and encouraging even during matches.  Secondly, is the chance to compete again as part of a team.  I didn’t know how much I missed competitive team sports, until I joined up and was able to actually play something again.  I’ve known that I like to compete and win, but there only so many times that I can play Old Maid or the Match Game with my nieces and nephew before I want something a little more advanced.  And Rugby has provided that opportunity.  Lastly, my involvement allows the chance to be around people similar to me.  People with disabilities of various levels and severity, but going for the same goal while also able to crash into anything along the way without worrying about breaking or damaging something.  I’m sure any wheelchair user will share the same thought, it’s nice to not have to be careful and not bump into stuff, concerned about damaging or breaking it!  Now, the challenge is just how hard can you hit someone and that is a welcome switch up.  I’ve also learned travel tips, daily life hacks, or about new gear to use in daily life as a way of just being around other people that are in the same situations.  All in all, this has been a great experience and I look forward to seeing what else will develop in this new world I’m venturing into. #Awareness