The Coolest Halloween Costumes Include AT!

By MATP Staffer Laura Hall

I have to admit, this is my favorite blog post of the year.  For the past few years, each Halloween, I have written a blog that features Halloween costumes that incorporate mobility devices and other AT into them.  Every year I find costumes that are more innovative than the year before.  Not only is it a fun topic, but it gives me a good feeling because these costumes represent not only pride in one’s disability identity but pride in one’s assistive technology as well.  So often, ableism and internalized ableism makes people feel as though their assistive technology is something shameful or something that should be hidden.  By creating a costume that uses AT in its design, it is a way of claiming your assistive technology, and your disability with pride.  So without further ado here are the top five Halloween costumes I wish I had thought of as a kid.

C’Mon Down!

Boy in wheelchair with Wheel of Fortune wheel on his wheel covers. He is holding a $5000 wheel piece.

A Giraffe in its Natural Habitat

Girl in a giraffe costume. Her crutches make up the front long legs

Winter is Coming

Young man in a powerchair wearing clothing from the series "Game of Thrones". His wheelchair is fashioned to look like the Iron Throne

No High Sticking!

Young child in wheelchair wearing a hockey jersey and holding a hockey stick. His wheelchair is surrounded by a penalty box

My Little Pony Chariot

Girl in her wheelchair that has rainbow wheels, a cloud surrounding the chair, being pulled by a "My Little Pony"

Halloween is a special time for many kids and Magic Wheelchair is an organization that strives to make it, as they say, “epic”.  A volunteer group of designers and builders work together to create extra special costumes for kids with disabilities picked through an application process each year.  The My Little Pony costume above is an example of their magic.

Costumes are not the only barrier for people with disabilities on Halloween.  The Connecting for Kids website has helpful considerations to think about related to creating an inclusive Halloween.  For example:

  • Keep in mind that children who are nonverbal may not be able to say “trick-or-treat” or “thank you.” Do not push for verbal responses and be sensitive to children who do not give expected social feedback.
  • Be prepared to describe treats for children with blindness or low vision issues.
  • Make sure that you are handing out treats in a well-lit, accessible area. If your house is not accessible, consider handing out treats in a different location (for example, in the driveway or in a community common area).
  • When addressing trick-or-treaters, make sure they can see your face and mouth as you speak. This can help children who struggle with speech and hearing issues. Better still, learn some simple Halloween signs (video).
  • Be observant. Children with anxiety or other issues may wander from a caregiver or safe area.

Happy Halloween!

Introducing: The Flash!

By MATP Staffer Laura Hall

Laura her power wheelchair

Last week I got a new power wheelchair.  It’s hard to explain to people who don’t use mobility devices, but getting a new wheelchair is like Christmas, Easter and your birthday all rolled into one. Way more exciting than a new car.  Obtaining a new wheelchair is usually a long process.  Typically you can only get a new chair every 5 years, and that’s assuming your prior chair is worn out and your seating needs have changed (from growth, etc.)   It involves an individualized assessment, a mountain of paperwork, a pre-authorization process, and a ton of waiting as the insurance cogs slowly turn. Needless to say, delivery day is exciting.

 

A manual wheelchair reclined back showing the various angles of the tilt in space feature

My new wheelchair (also known as “The Flash” for it’s red and yellow design is a Permobil M3  It is a mid-wheel drive configuration, which gives me a tighter turning radius than my previous chair.  This is helpful for getting around corners in my new home.  The are other drive configurations, front wheel and rear wheel that have their benefits and drawbacks.  People often tell me that my wheelchairs are fancy or have all the bells and whistles.  My chair has a lot of features that allow me to change my positioning, but they’re certainly not luxurious or frivolous in any way.   The tilt-in-space feature allows me to shift my body weight to prevent pressure sores.  Pressure sores, once you have them, are serious and difficult to heal.  It is also the way I transfer into the chair because it allows my hips to flex and slide back naturally.  The other benefits of tilt-in-space functions have been well documented.

 

 

Woman reaching into her microwave using the Active Reach feature

My chair also reclines, meaning the back only reclines, so I am able to stretch my hip flexors.  Spending 16 hours+ in a wheelchair can cause contractures and shortening of the muscles if not stretched periodically during the day.  To help with circulation and blood clots, the footrests also elevate out.  There is a new feature on the Permobil M3 is called Active Reach, this feature is invaluable, as it tilts the seat up slightly and forward.  This enables me to reach doorknobs, counters and lowers the seat a bit for easier transfers.

 

Finally, the Flash has a seat elevator that raises me up about 12 inches.  I use this feature when I’m getting into bed, cooking, needing to reach something at the grocery store and even when I want to have a conversation eye-to-eye.  People often don’t understand the importance of the seat elevator of having a conversation at eye level.  There is a certain power dynamic that you feel when someone is looking down at you.  Unfortunately, insurance doesn’t usually cover this feature, deeming it “not medically necessary”.  This is a feature I will be paying for out of pocket for quite some time, but for me, it is absolutely necessary.

Wheelchairs that are custom fitted and have features like mine and called Complex Rehab Technology, meaning that they are not the type of wheelchairs you could buy as off the floor at a medical supply company.  Unfortunately, insurance companies have steadily been lessening their coverage for equipment like mine as a cost containment measure.  In particular, customised manual wheelchairs that have features like tilt and recline are at risk, as insurance companies are now calling extremely critical parts of wheelchairs “accessories” that are not medically necessary.  The National Coalition for Assistive and Rehab Technology (NCART) is an organization of suppliers and manufacturers of Complex Rehab Technology working on legislation and policies to change and improve what is covered by insurance companies.  In my previous work with this organization, they have stressed the importance of users of this type of technology telling their story to legislators.  If you are interested in this type of advocacy, NCART would be a great place to start.

I am off to the races with my new sidekick the Flash.  We hope to see you sometime….if you can catch us!

 

 

 

 

 

 

Sleep with Me

Night scene with a tree, crescent moon, and figure in the moon reaching for a star

By MATP Staff Member Laura Hall

I have always had trouble sleeping.  Even as a little girl, I’d lie awake thinking that I was the only one in the world awake. I’d wake up my sister, who would not be happy and certainly not comforting.  Now I’m an adult, and thankfully understand the concept of people awake in different time zones, shift workers, etc.  However, the bedtime anxiety has never gone away.  I can’t seem to slow down my thoughts, and it seems like all I do is keep myself awake by worrying that I’ll never fall asleep.

A figure reading a book from behind. Headphones surround the figureWatching TV or using my phone keeps me awake because of the blue light.  My Cerebral Palsy makes it difficult to hold books, so I sometimes listen to books through the National Library Services‘ free service for people who have print disabilities, BARD.  I have started getting myself into a bedtime routine, often using the Amazon Echo’s skills to play Jeopardy and then relaxation music as I prepare to wind down.  I’m finding this is helping, but my heart still races when I lay down and turn the lights off.

Sleep with Me Podcast LogoDuring a random conversation at lunch, my colleagues on the Michigan Assistive Technology Program were discussing which podcasts were their favorites.   Someone mentioned a podcast called “Sleep with Me“.  I laughed at first but she explained that it was a podcast meant to help you fall asleep.  I thought it was going to be more relaxation music, but I gave it a try.   The podcast host, “Scooter”, explained that he was going to help me sleep by telling me a bedtime story.  Odd, I thought, but I kept listening.  Some gentle music started, and Scooter began talking.  Several minutes went by and I realized  that I had no idea what he was talking about.  I laid there trying to make sense of it, and, ironically, fell asleep.  I tried it a few more times, and always fell asleep.  Soon, it dawned on me that the podcast isn’t supposed to make sense!  The genius of this podcast is that it is supposed to distract you from your racing thoughts and bore you to sleep. Even if you don’t sleep, (and I have yet to stay awake for an entire podcast) Scooter is there to keep you company.

Listeners have also created their own facebook page dedicated to the podcast.  Posts range from tips on sleep hygiene, funny animations, or just posts from people who can’t sleep during the night.  The best part is that someone is always awake and online to chat with so you never feel alone.  Several people, called “Noderators” monitor the page and are available no matter what time it is.  I finally don’t feel like I’m the only one in the world awake!  The Sleep with Me podcast is an unusual, but free and effective form of assistive technology that helps me with my anxiety and insomnia.  Are there other tactics you use?

Coloring Outside the Lines

By Laura Hall, MSW,  MATP Staffer

US Flag within a circle and the words Happy Labor Day

Happy Labor Day!   You might wonder why I’m working on Labor Day and talking about stress.  Isn’t work stressful enough?  Sure it is.  Everyone experiences stress in their lives, and sometimes it is magnified when you have a disability and can’t be as independent as you want to be.  For example, public transportation is not running today, so while I would like to attend the gatherings and barbecues, it just wasn’t possible today. That still doesn’t mean that I’m not annoyed by it…

I’ve been thinking all weekend about ways to de-clutter my mind and come back to work on Monday feeling refreshed.  I’ve grappled with it all weekend and just found myself getting more frustrated.  Then someone gave me a suggestion for what to do when I feel stressed and just can’t let it go: “Do something that you can feel and do at the same time”.  So simple.  Keep myself occupied while doing something I love.  Time to turn to my assistive technology (AT) toolbox!

JournalI like writing, so I bought a journal.  Argh…I have Cerebral Palsy and fine motor skills are difficult.  My hand quickly began to get tired and I began looking at other options. I considered a journaling app like Penzu, that allows you to journal on the computer or with the IOS/Android app. Penzu allows you to use audio, pictures, and other tools to capture thoughts, feelings, and ideas. Then again, maybe I could use Dragon Naturally Speaking, software that turns speech into text.  Even though these were great options, I still felt stressed so I gave up the journal idea.

I know that are many apps that teach ways to relax.  Breathe2Relax, Fluid, and Headspace are a few of my favorites, but there are an infinite number of others.  Speaking of apps, did you know you can try different apps and hundreds of other pieces of AT by requesting a device demonstration through your local Disability Network ?

Personally, apps and podasts work wonderfully to help me relax. However, this weekend they also put me to sleep.  Sleeping is good, very good in fact, but I still wanted to enjoy my day off, not sleep it away.    It was time to try something new.

Well, then there’s that coloring thing that’s the new fad. I’ve tried it.  Don’t really get it.  Part of who I am, and, ironically, part of the reason I’m so stressed,  is that I am a rule follower.  I hate to make mistakes, I have to have things orderly and I definitely cannot color outside of the lines!  Why?  Heck if I know.  It just irks me.  The adult coloring books that I had seen had all been beautiful and interesting and fun, but there were so many tiny lines to fill in.  How is that fun?Highly Stressed

Then, I found something that looked interesting.  A coloring book called: This Annoying Life: A Mindless Coloring Book for that Highly Stressed by Oslo Davis.  Davis’ book shows everyday situations that are super annoying, like a tangle of cords, or the cat sleeping on your face. and encourages you to color it any way you want! Scribbles, doodles, mosaics, it’s totally up to you!

Coloring outside the lines helped me have a stress-free Labor Day.  What types of assistive technology help you when you need to get away from it all?

 

 

AT to the Rescue!

By MATP Staff Laura Hall, MSW

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MedCenter 31-Day reminder system showing color coded pill boxes and alarmRecently, I had to take a leave of absence from Michigan Disability Rights Coalition due to a illness.  Normally, I am an extremely organized person, but in this case, all of that went out the window.  During that period and even now, assistive technology has been my saving grace.  Here are just a few of the things that have been getting me through:

My medication changed drastically during this time and it was hard for me to manage the new dosages.  I used the MedCenter 31-Day Reminder System with Talking Alarm Clock.  This system holds all of my pills for the month in daily pill boxes.  The boxes are numbered and color coded so I can know if I’ve taken by pills for the day.  The alarm clock, which I affectionately call “the nag” reminds me… repeatedly… when to take my pills).

Amazon Echo Dot in white and blackI have had an Amazon Echo (also called Alexa) for quite some time.  It became so useful to me while I was ill, I bought three more Echo Dots! Alexa was able to play relaxation music, play games with me, read my Audible books, and send voice messages to friends, family and co-workers, and even turn on and off my lights.   The things that Alexa is able to do (her “skills”) grows every day and I am excited to see what else she can do!

While I was at home, I was often unable to get into my power wheelchair.   As luck would have it, my power wheelchair also broke down at this time.  Transferring, especially into the shower with the help of my personal care attendant, was more dangerous than it has ever been.  To help with showering, I used a tub transfer bench (which comes in a variety of sizes and models), a pocket shower curtain to easily reach shampoo, etc, and…scuba shoes!  Scuba shoes? Scratching your head a little on that one?  Let me explain.  Scuba shoes are designed for scuba divers to protect their feet from rocks and debris and they have mesh that allows them to dry quickly . For me, they provide great grip and traction on slippery surfaces!  I also use them in aquatic therapy for protect the bottom of my feet.

Bottom of a scuba shoe showing tread and grip

 

I am so grateful to assistive technology for getting me through this rough patch.  I am also really happy to be back in action with the Michigan Assistive Technology Program (MATP) and contributing to this blog again!

How does AT “come to the rescue for you”?

 

 

Adventures in Lawn Work

Spring is finally here!  It’s my first spring in my first home and I’ve been anxiously awaiting the time when I could finally get out in the sunshine and work in my very own yard!  I knew it was going to be quite the job.  Our home had not been lived in for two years prior to us moving in so it was quite overgrown, to say the least.  We moved in late November, so there also wasn’t much time for us to clean up from the fall season.

I was so anxious to make our lawn look nice, that I was left with a sense of disappointment when I couldn’t exactly jump right in.  As a wheelchair user, I’m not able to reach the ground, which seems fairly important for yard work.   The largest job we have to do is raking.  There are still those leaves from last fall and quite a bit of dead and unwanted vegetation.  When I began, I started using a common leaf rake with a grip made of foam rubber tubing.  This allowed me to hold the rake further down toward the tines with the rest of the rake over my shoulder, grabbing the leaves and driving my wheelchair backward toward the leaf pile.  Truthfully, the rake was

Device that attaches to the handle of lawn tools, allowing you to put your arm through a ring and to a grip that lower down on the handle
Robo Handle

extremely heavy to use one-handed and the whole process was exhausting and not that effective.   I realized I needed to slow down and enjoy the process. I’ve been thinking about my abilities and the assistive technology that would work best for me.  When I began researching on the web, I realized there are many options for adaptive lawn tools that I had never thought about and several websites dedicated to the subject.  For example, there are lightweight rakes, telescoping rakes, rakes with interchangeable heads and tools, rake-scooper combination tools, and the Robo Handle, which attaches to handles to allow the use of tools with one hand.  Even a YouTube video of a wheelchair user raking convinced me that perhaps I need to change my technique.

No Bend weederThere is still much work to do beyond raking, however.  Weeding is a never ending chore, which is why I was excited to find the No Bend Weeder.  It is has a long T-shaped handle, and small “claws” that go into the ground (so it does require some arm strength to penetrate the ground).  You then twist, pull up the weed, and press a button to shoot it into your lawn/leaf bag or barrel.

Raking and weeding left some obvious bare spots in the lawn.  One of my favorite lawn duties is spreading grass seed and watering it.  Seeding by hand led to piles of seeds in some spots and none in others.  By using a simcoiled hoseple flour/sugar container with a handle and small spout, I was able to spread the seed much easier and evenly.  Watering without experiencing kinks is a problem for everyone.  I’m looking to invest in a lightweight coil hose that might be easier to use.  I’m finding that there are also many options for hanging hoses at any height.

I’m so excited to finally have a lawn and to discover that there are so many AT options to help me participate in creating my own beautiful space.  We still have much work to do, but I am starting to see the beginnings of my outdoor sanctuary.

view of a mulched tree. wooden fence, small garden plot

Assistive Technology: Not a Replacement for Social Responsibility

SignAloud Gloves - black gloves with micro processors on the wrists

One of the most exciting parts of working for the Michigan Assistive Technology Program is that it puts me in social media circles where I am more likely to see the latest prototypes of equipment and devices.  It seems like I see some sort of device, app, or equipment that amazes
m
e every day,  Just this week, I came across, gloves that turn sign language into speech, an electric mountain biking handcycle,  and a wheelchair accessible motorcycle.  The potential of assistive technology is limitless, and the ingenuity of people who develop new technologies keeps me in a constant state of awe.

Yet, I keep thinking back to a conversation I had several days ago,  I was talking with a woman who asked about my career,  When I told her I worked with assistive technology and explained what that was, she immediately became very excited, and recalled a video she saw online of a stair-climbing wheelchair.  “Isn’t it great?”  she exclaimed, “Pretty soon we won’t even need to build ramps!”

A power wheelchair ascending stairsNo.  Not great, for several reasons.  First, and most obviously, Many of these innovations that we are seeing are prototypes,  They may or may not ever become available on the mainstream market.  If they do become available on the market, it is most likely that only the most affluent, who are able to pay out of pocket, will be able to obtain them.  Most assistive technology tends to be low cost/lower tech and paid for by insurance,  People with disabilities and advocates are fighting for coverage of even the most basic equipment (durable medical equipment is an excellent example), let alone the latest cutting edge designs.

Secondly, the argument that stair climbing wheelchairs would negate the need for ramps in based the medical model of disability.  It’s saying to people with disabilities that their disabilities are the “problem”, and puts the responsibility on them to negotiate a world that is not accessible to them.  It puts the social responsibility of access as a civil right on technology and not on society, where it should be.  As a person with a disability, I am given the message that I am the problem, and that being afforded accommodations is “special” or “extra” in a thousand different ways every day.  In reality, my disability is a gift, not a problem.  The problem lies with society and the idea that we need to be fixed or in some way made better by technology instead of being granted the same access (physical and otherwise) as everyone else.

Finally, sometimes, the latest and greatest technology cannot and should not take the place of other methods or technology.  For example, many people now argue that there is no longer a need for people who are blind to learn Braille because screen readers and other auditory technologies are available.  However, by relying solely on auditory technology, a person may be missing out on important literacy skills.  There are also places where Braille may be the only way to obtain necessary information, such as locations and orientation within buildings.  It is also important to consider that communication via Braille and American Sign Language are very important aspects of disability (Blind, Deaf) community and culture.

Innovations in assistive technology are a wonderful, exciting thing.  I am certainly not arguing that progress and development should stop.  However, technology should not take the place of the social responsibility we have to provide access and accommodations to all – it is a civil right.  We also must be mindful that these cutting edge technologies may not be available or appropriate for everyone, and that existing technology and methods often play an important role in the disability community, pride, and culture.