Disability Futures

http://bit.ly/2HV2EC8

Camping as a wheelchair user can present many unique challenges, but few that a little planning and common sense can’t overcome. Over many camping trips I have fine-tuned a low-on-luxury approach that allows me, a C7-8 quad, to enjoy the wilderness and find that mental refreshment that only nature can provide. Here are seven tried-and-true techniques and equipment solutions.

1. Tarps, Not Tents

Instead of spending hundreds of dollars on one of the few tents designed for accessibility, a simple tarp can keep you out of the elements, provide ample coverage and be set up in a variety of ways to optimize views or privacy. Correctly set up, tarps make it easy to roll in and out and remove concerns about damaging the lip of a tent. There is a learning curve to setup, and it’s critical to know the ground and tree conditions where you are camping and whether a tarp-based setup will work there.

2. Cots Change Everything

A sizeable cot will be an excellent upgrade to your sleeping setup, making transfers easier and more stable and helping protect your skin. A foam pad will further boost your sleeping comfort and warmth. I also use my extra travel ROHO cushion under my hips to ensure a good night’s rest. If space is no obstacle, a queen-sized cot will bring more comfort and mobility. Lastly, cots are more reliable and quicker to set up than an oversized air mattress.

3. Well Ac-Quilted

I can recall no more terrifying a moment in the woods then waking up stuck in a sleeping bag. Tiny zippers and thin nylon just don’t mix well, especially for those with limited dexterity.

A backcountry quilt is made of the same materials as a traditional sleeping bag, but it doesn’t have a zipper and does have a pocket for your feet. I have used a backcountry quilt for well over a thousand miles of backpacking and now use it in the front country as bedding. If I am hot, it is easy to vent. If I’m cold, I tuck the quilt around me. You can get a very high quality custom quilt for less than or the same amount as a high end sleeping bag, due to less material and labor.

http://bit.ly/2w8AqlN

Complex rehab power chairs are fantastic when it comes to performance and comfort, from suspension to power seating. However, among their biggest limitations is transportability. Traveling with a power chair can be challenging. However, all is not lost. There is a new generation of very affordable portable power chairs that can serve as secondary travel mobility options for even those who typically use complex rehab power chairs.

Redefining the WHILL

WHILL burst into the mobility market several years ago with the Model A, followed by the more funding-compliant Model M. What made the WHILL line unique was its avant-garde look and its use of omni wheels on the front, giving it remarkable maneuverability for a rear-wheel drive, full-size power chair. What held it back was its lack of features found on complex rehab power chairs, and a staggeringly high base price. Fortunately, the WHILL team recognized its successes and shortcomings and dramatically changed its approach. The result is the Model Ci, which hits a market sweet spot.

The Model Ci’s patented front omni wheels give the distinct advantage of eliminating swiveling casters. This allows the use of a larger wheel without interfering with the user’s foot placement. It also allows for extraordinary maneuverability. The Model Ci is about the length of a compact scooter, but due to the omni wheels, it turns in half of the space needed by a travel scooter. This maneuverability is among the biggest benefits of the unit.

From there, WHILL departed from its prior platform and made a slimline design that is sleek and portable. A simple but supportive seat with joystick and controls integrated into the armrests provides meaningful positioning for most users — at least for part time use. As for portability, the frame quickly disassembles into three separate pieces, easily fitting into a taxi’s trunk. Speeds up to 5 mph and a range of 10 miles are powered by a 10Ah lithium-ion battery.

Among the most groundbreaking features of the Model Ci is its Bluetooth connectivity with an iPhone. The app not only displays all of the chair’s data, but also allows driving it via your phone remotely, so you can fetch it from across the room or wherever it may be, within reason.

The Model Ci has a MSRP of a mere $3,999, available through SpinLife.com and other online mobility retailers. That’s a lot of product for the money. So, how do they do it so cost-effectively? The answer is, although it’s marketed to wheelchair users, they make it clear that it’s a “personal electric vehicle” that hasn’t been submitted or tested as an FDA-regulated medical device. With WHILL’s exceptional reputation, this shouldn’t be a deterrent to the buyer, but it certainly has reduced the design and manufacturing costs dramatically. In all, it’s a fantastic portable power chair at a reasonable price.

http://bit.ly/2reYlei

They say you should go into a job interview with a firm, confident handshake. Paralysis has made my handshake floppy and weak, but it remains confident. I always reach for the handshake, even when the recipient is skeptical and awkward at touching my hands. I deserve the dignity of touch.

So, I drop stuff all the time and I look funny when I eat.

When I wave to children, it looks like I’m waving a fist and they wave back with a fist, too.

Everything that is childproof is impossible to open and therefore quad-proof.

Opening a bag of potato chips requires a combination of mouth/hands/chest tag-team skills.

In the morning, the palms of my hands have a stinky, sweaty smell from being closed all night.

I’ve learned to be accurate at knuckle texting.

The lady who does my manicure always messes up at least once because my fingers will spasm.

Most of the zippers on my jackets and bags have rings so I can loop in with my thumb and open them.

I love speaker phone.

I’m totally predictable when playing Rock, Paper, Scissors.

My hands have personified touch. They are utilitarian. They act sassy. They express tenderness. They exude confidence. They elicit  sensuality.

http://bit.ly/2ji0f9y

I started listening to podcasts about two years ago when I was looking to alleviate my insomnia; the first show I found was Denzel Washington is the Greatest Actor of All Time Period with W. Kamau Bell and Kevin Avery. Being a Denzealot myself (who isn’t?), I was hooked by these hilarious and insightful dudes breaking down the best of Denzel’s work.

Then I started checking out other podcasts, like Stuff You Should Know, The Black Tapes, and Welcome to Night Vale. They all fascinated me in different ways, but I longed for the disability voice I wasn’t hearing in these shows. I wanted to know where all the crips were, and how I could support their work on the digital airwaves.

Through research and word-of-mouth, I discovered these rich, powerful, illuminating shows produced by crips. That’s why I created this living resource showcasing podcasts by disabled people. Our words hold value, and more folks need to pay attention.

Some things you should know about this list:

• As I learn about new shows, I will add them below. Let me know if I’ve left you off in the comments, or tweet me @geekygimp!
• If you see your podcast below with incorrect info, please get in touch as well. I pulled most descriptions directly from the podcasts’ websites.
• I have not listened to every show, so I can’t claim to agree with everything said in each program.
• Unfortunately, most of the podcasts below do not have transcripts. I’ve used red asterisks to denote the shows that DO have them.
• I urge all podcast creators to include transcripts for deaf/hard-of-hearing patrons and those with audio-processing disabilities. If you need help creating transcripts, comment below and we can try to work on that together.

http://bit.ly/2KbcLnN

Today’s episode is about paratransit with guests Denise DiNoto and Jess Moye. Our last episode was about public transit and paratransit is specific type taken by some people with disabilities and older adults. Denise and Jessica share their experiences using paratransit services from their local communities and how much labor they expend just to be able to go out and do what they want to do.

Transcript

[Google doc]     [PDF]

http://bit.ly/2J1c2En

Since winning NPR's Tiny Desk Contest in 2016, Gaelynn Lea has been touring nonstop, sharing her violin music and disability advocacy nationwide. Lea, a classically trained violinist, was born with brittle-bones disease. At age ten, an orchestra performed at her school, and she immediately fell in love with the music. The following year, she joined the school's orchestra, where a teacher taught her how to adapt her instrument, playing it in an upright position instead of under the chin; she's been performing with the violin ever since. While she didn't start out playing music to champion a cause, she hopes her performances will raise awareness about both disability pride and some challenges people with disabilities regularly face that are too rarely discussed.    

Westword caught up with Lea to talk about her music, looping pedals and disability activism.

http://bit.ly/2IE0ruu

It’s easy to complain about public transit, but for so many populations, including low-income people, older adults, and people with disabilities, it’s the only option available.

Today’s episode is about public transit focusing on two systems: MARTA (Metropolitan Atlanta Rapid Transit Authority) and the MTA (Metropolitan Transportation Authority) in New York City.

Maria Sotnikova and Alejandra Ospina are my guests and they share their experiences using different forms of transit from these two systems. They’ll also talk about larger systemic issues about accessibility and infrastructure in these two metropolitan areas.

Transcript

[Google doc]     [PDF]

https://bbc.in/2Hb4gI8

Apple wants to introduce new emojis to better represent people with disabilities.

A guide dog, a wheelchair user and prosthetic limbs are just some of the symbols it's suggested.

It said very few of the current emoji options "speak to the life experiences of those with disabilities".

"Adding emoji emblematic to users' life experiences helps foster a diverse culture that is inclusive of disability," it added.

Apple's submitted its proposal to the Unicode Consortium, the organisation which reviews requests for new emoji characters.

In its submission Apple said: "Currently, emoji provide a wide range of options, but may not represent the experiences of those with disabilities.

"Diversifying the options available helps fill a significant gap and provides a more inclusive experience for all."

It's made 13 suggestions of emojis to introduce.

• A guide dog
• A man and woman walking with a cane
• A man and woman signing that they are deaf
• An ear with a hearing aid
• A man and woman in both mechanical and manual wheelchairs
• A service dog (a trained dog that helps those with hidden disabilities)
• A prosthetic arm
• A prosthetic leg

Apple said: "This is not meant to be a comprehensive list of all possible depictions of disabilities, but to provide an initial starting point for greater representation for diversity within the emoji universe."

Are you Neurodiverse? You can help improve cognitive accessibility standards by taking this survey...

https://goo.gl/yFtaoB

https://goo.gl/Z6UDuc

In a study in the February edition of the Annals of Emergency Medicine, transgender adults who visited the ER overwhelmingly reported that health care providers lacked competency in issues specific to the transgender community. For instance, many providers did not understand the meaning of “transgender,” and they lacked experience with and knowledge in trans-specific treatment, such as the effects of hormone therapy or complications from reassignment surgery.