LOAN CLOSET

At some point in our lives most of us will experience, at minimum, a temporary disability.  Whether that is through surgery, illness, accident or just that darn aging process.  The loan closet at disAbility Connections uses affordable pricing to assist people with medical equipment (crutches, scooters, shower benches, canes, and much more) that may be needed as either a temporary rental or long term.

We provide approximately 760 people each year with needed equipment.  Much of the equipment we provide is either not covered by insurance or requires a high deductible.  No matter what your income we strive to be sure that no one goes without. 

We are extremely lucky that Jackson is such a generous community.  Equipment and monetary donations allow us to keep this program successful.  We sanitize and repair donations in preparation for loan.  What we can’t repair we remove any usable parts and use for our Fix-dis repair program.

When you visit our office the first face you are likely to see is Brooke.  Her smile and energy are contagious.  I’ll let her tell you in her own words her feelings on working with Loan Closet customers.

Brooke, Customer Relations Specialist

  We will have a consumer come in looking for something out of the ordinary and it’s difficult to tell them that we don’t have what they need.  Then “poof” someone will make a donation for exactly what they were looking for. The loan closet is like a genie.  One of the most rewarding things I get to do in my job is calling the consumer to inform them that we are able to meet their need.

In my short time working with disAbility connections and the loan closet, I continually hear from our community how grateful they are and that we made such a huge impact during a tough time in their lives. When you see someone meeting their goals through the loan closet you can see their independence rise, which is our mission; to see those with disabilities live their lives as independently as possible.  It’s a beautiful thing!

We aim to help people remain as independent as possible and access to affordable durable medical equipment is an important piece in the formula.  If you have used the loan closet or someone you know has, leave us a comment or share the experience on your social media.  

Disability Defining and a Necessary Change in Rhetoric

As a person with a disability, I can’t keep track of how many times I have been referred to as a “disabled person.” First of all, thank you, truly, for putting my disability before who I am as a person, as that does leaps and bounds for my self-esteem. Secondly, I feel for those individuals who you have referred to as such in the past. Let me, potentially, be the first to tell you that, for all intents and purposes, that’s not the correct identification. Before you lose your mind due to the fact that I have disrupted a deeply-ingrained thought process, allow me to explain the difference.

Something called people-first language is put in place when people with disabilities are referred to as such, putting the person at the forefront and not the disability. Instead of autistic person, per se, you would say person with autism. Instead of wheelchair-bound, you would say person who uses a wheelchair. A few extra words can make all the difference.

With this in mind, articles have been written for and against this necessary change in rhetoric. While disability-first language, as I will call it, is poor form, others dispute that people-first language is just as distasteful. The focal point behind this thought process stems from the idea that an individual’s disability is looked at in a negative light when people-first or person-first language is used. “Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see,” wrote Cara Liebowitz in a 2015 piece on the subject. Essentially, Liebowitz thinks that her disability should be mentioned when she is being referred to, as it is a part of who she is. She writes, “The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.”

Admittedly my stance on the topic changes depending on the situation I am presented with and a concrete response on Liebowitz’s ideas is something that I have yet to establish, even after reading her piece three times through. I much prefer “person with a disability” over “disabled person.” I am not a girl with cerebral palsy, but much more that should be considered first before my disability is even approached in conversation. While “person with a disability” is more respectful than “disabled person”, that poses the question of whether a disability should be mentioned at all.

Would you prefer to have your disability mentioned in conversation when you are first being introduced to someone, not at all, or at another point? Do you identify as a “person with a disability”, a “disabled person”, or neither?

      Transportation is vital for community stability and growth, but most people don’t usually think about public transportation especially if they own a vehicle and can drive it.  The hard fact is that some of us and the elderly can’t drive and/or can’t afford a vehicle and want to live independently, so we rely on public transportation or para-transportation to go places.  Here in Jackson we are very fortunate to have the Jackson Area Transportation Authority (JATA) which provides both public and para-transportation. 

     The difference between them is with public transportation. JATA’s vehicles are on a set schedule and can only be accessed at a designated bus stop or the downtown transfer center. Another thing people need to be aware of is that public transportation buses are restricted to stops within the city with few exceptions. That’s why most people call them city buses. The Para-Transit system is for a person with limitations (ADA eligible) and can’t make it to a bus stop. The person would need to have a medical professional certify that they have a disability using a form available through JATA. Once approved the person may call JATA’s dispatch center and arrange transportation through the dispatch center at 517-788-8410.  You must call at least 24 hours in advance but, if you live in the city of Jackson you can schedule a ride 2 weeks in advance. If you live outside of the city 24 hours in advance is the maximum time allowed.  JATA’s main number is 517-787-8363. At your request, they will send you a bus schedule which shows where the city buses are scheduled to arrive and when. You can also get a brochure telling about the programs JATA has available.  Para-Transportation, on the other hand, works on a demand response, which means that, once approved, you can schedule a ride door to door from your home to the location you need to reach.   All JATA vehicles are equipped for wheelchair users including the public transportation buses.                   

  Para-Transit vehicles are not restricted to the city but can go anywhere within Jackson County as long as you live in the city.  If you happen to live more than ¾ miles outside the city Para-Transit still will pick you up but they only do pickups 3 days a week whereas city residents can get a pickup 7 days a week, depending on what day and time you need.  For information on fares, schedules or general information call the main number for JATA, for compliments or complaints call 517-780-3775.

Here are some of the main things you should know about the transportation service available here in Jackson.

• 1.     Main number for JATA is 517-787-8363.  When calling this number you can request:

  A.    General information about services they offer
B.     Schedules and Brochures, etc.

• 2.      Para-Transit’s number or Reserve-A-Ride as they call it is 517-788-8410.  When calling this number you can schedule a ride, they will tell you what the fare will be as well.
• 3.     The number for compliments or complaints is 517-780-3775.  When calling this number you can tell them how great there service was to you or what went wrong.

Now it’s time to reveal myself.  My name is James Cyphers and a person with a disability. I deal with the effects of Post-Polio and am a wheelchair user.  I work part-time at disAbility Connections as an Independent Living Specialist.  I’ve worked as an advocate for people with disabilities for approximately 18 years and I have been a board member for JATA for about 12 years, that’s how I know this stuff about JATA plus I’ve been riding JATA’s buses for almost 40 years.  I’ll end here, but I have much more to say so stay tuned!  And I’d like to hear from you as well.

 

We’ve likely all seen some great uses of Duct Tape in our days.  I’m all for it, I know the cosmetics aren’t the best, but if it’s doing the intended purpose and it’s only temporary who really cares??  Even if it isn’t short term, if you are good with it, that’s all that matters.  But what about the times duct tape isn’t going to do the job?   In my opinion, Zip-Ties are the next best thing.  Plus a package/bag of a few zip ties are relatively cheap and not very hard to stash somewhere in a pocket, purse, backpack, or wheelchair so you can always have some on you.  Duct Tape isn’t as easily stowed out of the way.  But why would zip-ties be so useful you ask?  What can they do for you that duct tape won’t?  Allow me to provide some examples.

For any mobility device users, we are often just one bad bolt from losing either a key component or our overall mobility.  However, if you have a stash of zip-ties with you it only takes a few to pass through where a bolt broke or fell out and you can continue on your way.  One time I was just getting into my van, heard a loud snap, and suddenly my back rest came unattached.  Without putting those zip ties into the missing bolt hole, I wouldn’t have been able to use my chair.  Lacking any core strength in my body, I would have been on the ground in no time if I had tried to move along and not address the broken bolt.  Then I’d be on the cold ground versus sitting in my chair still.  Big difference.  I have now had to use zip-ties at least 3 times to temporarily hold my chair together in place of a broken bolt until I can get home or a hardware store.

Although this winter has been bearable so far, we are just one snowstorm away from wreaking havoc on mobility device users in our areas.  All people don’t or can’t get out to shovel driveways or sidewalks in a timely manner.  One of the joys of using mobility devices in Michigan is dealing with all the weather elements and then unintentionally carrying those elements with you wherever you go.  Manual wheelchairs get hard to propel because the push rims get slick from the wetness in snow and casters get filled with it as well.  Power chairs perform better in snow, but still have drawbacks.  The false sense of power may lead users into deeper snow with opportunities to get stuck.  But, if you have those handy zip-ties you can pull a couple out and loop through spokes and around your wheels/tires.  Giving you some new, self-designed snow chains on the power chair that should help get traction and you going forward. 

Maybe you don’t use a wheelchair of any kind, but have difficulty using your hands on something like zippers.  Simply slide a zip-tie through the end of the zipper and create yourself a loop.  Should make it easier to get a finger or something into the loop to push/pull.  I have used these little loops on things like my backpacks or clothing.  Just another example of the ways you can use simple cheap items like zip-ties and provide a pretty good temporary or long term fix. 

Hopefully that’ll get you prepared for dealing with the little nuances we experience in daily life.  Whether you try one of the tips I suggested above or have some secret uses for other products, we can help each other by sharing knowledge.  Becoming more aware of what we are getting into and potential life hacks that keep us rolling.  #Awareness

 Hello, this is Stephen B.

I wanted to share my time after I left disAbility Connections on a Friday. After I left, using my power chair, I went down to the Habitat store on Prospect, there was no side walk so I rode on the side of the road. Was not bad, motorist’s watched out and merged over when possible.

Then I returned to First Street and Prospect, bummer missed the bus at the corner. Could not get to the sidewalk, the nearby curb cutouts were covered with packed slush. So I started north on First Street. I was thinking downtown is not too far from here. Looking for a place to get off the road and onto a safe place to travel. I went one block and used a driveway to get on the sidewalk, all the corners I passed were blocked with snow.

I could only travel short distance on the sidewalk, some residents had not removed the snow from the sidewalk in front of their home and there are areas in the sidewalk with more than 2 inch different in height. So I decided to stay on the side of the road, going against traffic. I made good time, weather felt little chilly with a mild mist. Next time I will keep better track of street names.

There was one corner that the curb cutout was clean, Greenwood Ave. I went on the sidewalk at the corner of Greenwood Ave and First Street for about a quarter of block, then I was stopped by a difference in height of sidewalk more than 3 inches. Back on the road again only to be met with almost detouring blocking. That part of First Street road has potholes so bad, I almost had to turn around. But I managed to get through the pot holes area, YEAH!

Onward I went, then I heard a male voice yelling. So I stopped and looked around, there was an older man in a power chair on the other side of the road. We met and decided to ride together downtown, He was moving into a new place. He was homeless for a short time. Bill was his name. We made it to his new place of residence and parted ways. I continued to the bus station, but bummer again. I made it just in time to watch the bus leave. So I decided to cruise around downtown and put in an apartment app at Otsego Apartment. Did not go to Elaine apartment, the thought of having an apartment on upper floor did not feel right. For some odd reason heights bother me now.

The downtown sidewalks and curbs were clean. The area was very accessible.

So I went back to the bus station and waited for the E. Michigan bus. The station was clean and the worker was very helpful. E. Michigan bus arrived, so I went to get on. The wheelchair ramp did not work, the driver had to use a bar to deploy the ramp. I feel the equipment needs to operate properly and drivers need to be more focused on driving and their passengers, rather than having concerns of difficulty manually deploying equipment. I exited the bus at Meijer and once again the driver had to manually deploy the ramp. I am going to start keeping track of the bus information.  Sometimes when I ride the fixed route buses, ADA led is not displaying and no audio announcement.  I did my shopping and while I was in checkout JATA reserve-a-ride dispatch called me to let me know my ride is there. They were 25 minutes early. Bummer missed out on chicken strip dinner.  The reserve-a-ride drivers are professional. All the ones that have been my driver. So far I have given every one of them a five star.

What did I learn from my road trip?  In the winter the curb cutouts are not useful when they aren’t cleared of snow/ice, some sidewalk are not shoveled and some areas need repair. There are other people that use mobility devices to get around, it is not only me. The fix route buses need a little more attention in the maintenance area. Downtown area was nice, I need to move in town. Most of all, it felt good to get out and travel.

Hope you enjoy my little story about my trip.

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:

Quad’s	Para’s
1.  Hand and finger dexterity	Bowel/Bladder Control
2.  More functional muscles	More function
3.  Better sensation	Walking

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