This Group of Volunteers Creates Custom Assistive Devices for People With Disabilities

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A switch-operated TV remote, a tool to turn the pages of a book, a steering device to help a girl with limited muscle strength operate a wheelchair, bars that allow a boy to sit up by himself at the dinner table, a machine that swings a baseball bat, a modular stroller, and even remote-controlled Super Soakers.

They’re all devices that have been customized for individuals with disabilities by May We Help, an Ohio-based nonprofit whose volunteers design and create personalized assistive equipment.

Other projects featured on the May We Help website include a rig designed to allow a woman with no hand movement to paint using her feet, custom steps that help a girl with spina bifida climb into bed, modified bicycle handlebars crafted for a man with limb differences, and a rocking sensory chair designed to help an 8-year-old boy on the autism spectrum concentrate and relax.

In its 10 years of existence, the organization, which bills its goal as “creating independence,” has produced about 600 such devices. Now with a team of 70 volunteers who come from all types of professional backgrounds – including engineers, industrial designers, machinists, seamstresses and therapists – May We Help aims to provide solutions that allow those with disabilities new ways to engage with the world around them.

“Our projects give people with disabilities hope and, in many cases, independence for at least one small portion of their complicated lives,” Bill Sand, one of May We Help’s co-founders, told The Mighty.

Sand, a engineer with 40 years of work experience, joined with two others to form May We Help, which officially gained nonprofit status a few years ago. Thanks to grants and individual donors, the devices come free of charge to the recipients, who apply for consideration through the May We Help website. If a project is accepted, a team of volunteers works with the recipient to design a suitable solution.

Sand says recipients are frequently moved by the finished product. That’s especially true of parents, who often cannot find existing equipment that fits their child’s needs – or cannot afford to purchase it.

“It gives them the hope and the joy that someone out there is listening to them,” Sand said. “Many times just talking to a parent about what they need shows the parent we care and that, to get something, they do not have to jump through hoops, fill out forms and deal with bureaucracy.”

While May We Help was founded in Cincinnati, its staff shipped projects to 20 states in 2015. Sand hopes the organization, which recently expanded to include a Columbus chapter, will spread nationally and perhaps even worldwide.

In the meantime, Sand said he’ll keep at work in the May We Help shop on one of the over 100 projects he’s had a hand in.

More about May We Help, including information on volunteering and donating funds, can be found at maywehelp.org.

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How Simone Biles' Training Advice Applies to Parenting Kids With Special Needs

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After winning individual gold in the women’s gymnastics all-around on Thursday, Simone Bile, in an interview, made a declaration: “I’m not the next Usain Bolt or Michael Phelps,” she said. “I’m the first Simone Biles.”

Before going to teach spinning class last week, I was rushing around the house getting ready. Out of the corner of my eye, I caught a glimpse of the Good Morning America interview featuring Biles at the Rio 2016 Summer Olympics. It struck me that this pint-sized, powerhouse had four training tips that packed a lot of punch. I grabbed my coffee, pen and pad to jot down a few bullet points.

Having a child with special needs presents many obstacles in life. My son 22-year-old son Nick, who has Down syndrome and is on the autism spectrum, has faced many with me. The low muscle tone (a trait of having Down syndrome) delayed him from reaching gross motor milestones until much later than most babies. He didn’t sit up until a year old, and he didn’t walk until he was 3 and a half years old. Nick had to work a lot harder to hit those targets, with years of physical therapy. We’ve also spent 22 years going to speech and occupational therapy to help feeding and communication, along with fine motor and sensory issues.

It has been quite a journey, which brings me back to those bullet points I scribbled down. In the GMA interview, Simone offered up some advice on her training regimen. They are four simple lessons, and my take on them apply to raising a child with special needs:

Enjoy the Ride

The journey isn’t always going to be easy. It’s going to take a lot of hard work and tears. And that’s to be expected. But find a way to embrace the journey. Have some fun as you go, and surround yourself with people who make you laugh.

Never Give Up

There will be days, weeks and months where you see no progress. Sometimes mistakes will be made. That’s when you pick yourself up and trust that you can do it no matter what.

Trust Your Squad

The fierce five huddled, cheered each other on, and believed in one another. When you have a child with special needs, you have to get a good squad together to help push them to succeed. This includes the IEP team along with outside therapists. Huddle in from time to time, and always keep the lines of communication open. Make sure all the goals and dreams for your child are in sync. Parents should have their own squad of friends and support groups you feel comfortable with. Your squad understands the insurmountable pressure faced when raising a child with special needs.

4. Treat Yourself

After a competition, Simone (whether she wins or not) enjoys pepperoni pizza. Parents of kids with special needs pend a lot more time and energy helping their child reach goals. It can be exhausting for everyone. Get a respite worker to watch your child once in awhile. Find the things you enjoy, and indulge. Go out to lunch with girlfriends, get a manicure, go workout, take a trip to Target (alone), enjoy a nap, have a glass of wine. Treat yourself, you deserve it.

That’s great advice from the 19-year-old Olympic champion. Life will always have it ups and downs, twists and turns. But if you can find a way to embrace the journey, you can hit the top of that podium and be the champion of your own life and your child’s.

Follow this journey on Down Syndrome With a Slice of Autism.

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I'm Tired of Paying the 'Disability Price Tag'

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The U.K. disability organization Scope’s work with the Extra Costs Commission highlights a major problem in society – being disabled costs money. I and many others refer to this as the “disability price tag.”

I’ve been campaigning for supermarkets to sell and manufacture bigger diapers for disabled children. But they’re far from the only necessity that is over-priced — it’s pretty much everything labeled under disability. If you’re disabled or you have a loved one who is disabled, you’ll know what I mean.

The disability price tag affects us in lots of ways, and it’s a barrier that is difficult to overcome. We continuously face high-cost specialized equipment, adaptations and insurance. Unfortunately, we don’t all have money trees growing in our gardens or Nick Knowles knocking at our door. No, these extra costs are an added “bonus” to a life already challenged by disability.

To change this, for a start, we need accessibility. Everywhere. I’m talking in our homes, schools, hospitals and while out and about. Yet a lot of businesses claim they can’t become more accessible for us because of cost factors. They’ll always throw in that they adhere to the U.K.’s Equality Act, of course!

Although there is a general lack of public understanding and awareness of what it takes to achieve access for all, it’s true the cost of making these changes can be massive. This is evident to us personally when we are looking to make adaptations to our homes, or purchase things like specialized wheelchairs or car seats. Suppliers charge too much and it is affecting us in every way possible.

I could give endless examples of the disability price tag. I’m currently looking to buy my 4-year-old son, Brody, a new car seat. The one I think we need looks exactly the same as his current seat. It’s the same brand, too. The only difference is the 5-point harness tolerates a higher weight. Yet it’s £600 – nearly seven times the price of his current seat. I need this seat for my son’s safety, not to mention it’s a legal requirement. But someone, somewhere has decided to take advantage of that.

Brody’s special shoes cost in excess of £120 (excluding VAT). I am extremely grateful that the NHS pays for him to have a pair, but the price is ridiculous. The disability price tag takes money out of our NHS. And at that price, it’s not like I can buy him spare pairs. His shoes cost more than my entire shoe collection!

I see people posting on special needs equipment pages a lot about beds that have high sides and padding. Their children need these beds, again for safety reasons. Yet they’re £6000 and upwards. Brody has night seizures, and there are anti-suffocation pillows available… for around £60!

Then there are toys and play equipment. Sensory toys that are over-priced, that half the time you can find cheaper in discount stores. Extortionately priced trikes that a lot of people can’t afford without charity funding. There’s a toy Brody used to like playing with in hospital play rooms which has a laughable price tag. It’s essentially a carousel of mirrored key rings with bells on the end that fans out when you spin it. It’s nearly £60.

We’re all being taken advantage of. There are over 12 million disabled people in the U.K., with a spending power of £212 billion a year. How can these prices be justified? Where is the equality? Why aren’t we all shouting about this injustice?

I agree with what Scope says in their Extra Costs Commission final report — we have to be loud and make our voices be heard. We need to work together to get better value for our money. And as a collective force, who knows? We may achieve this! We can’t sit back and let it continue.

We need businesses to listen, and the government and regulators to stop businesses from making things overpriced for disabled people.

One business that has listened is Marks and Spencer. They introduced a range of clothing for disabled kids, after grandmother Rita Kutt made them aware of the issue of overpriced clothes. Their range is currently expanding due to its success. They sell larger-sized popper vests (bodysuits) from £3, whereas elsewhere I have seen them advertised upwards of £14 each, which is just insulting.

The disability community is applauding Marks and Spencer, and rightly so. Remember, we all benefit from this – them and us. It’s not only great publicity for them, it’s making them money as they are taking advantage of a huge market the right way – quality products at a fair and reasonable price. And that’s all we really want. Equality.

If you hate the disability price tag as much as I do, please shout about it. Please make businesses aware that this is unacceptable. Please be part of making the change that we all need. Be bold. And be loud! Use people power. Use social media. Shout from the rooftops of Twitter and Facebook. Tag me if you like, on here or Twitter and I’ll even shout with you (@LauraRutherford) and so will my friends, who champion access for all. I really believe we can make a difference. We can’t sit back and take this any longer.

This post was originally written for and published by Scope. Scope is a charity that exists to make the U.K. a place where disabled people have the same opportunities as everyone else.

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When Doors Are Closed to Me as a Person With a Physical Disability

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I’ve recently had my first experience being on crutches, after knee surgery. Other surgeries were wrists; past lower body injuries always got me a glamorous Velcro boot.

I’ve only had rheumatoid arthritis for four (extremely long) years, and I know that the possibility of another surgery, injury, and/or disability is pretty good. Sure, that sucks. But you know what sucks more?

The world is not accommodating for people with disabilities at all. I know, I know. Newsflash, right? No.

The week after my surgery, I got sick and decided to run up to Patient First — translation: hobble to my mom’s car and have her drive me. When we arrived, I got up on my crutches and got to the doors. They were regular, pull handle doors. Two sets of them. No automatic door button, no option for me to open them on my own and not risk injuring my recovering knee.

In case you aren’t familiar with it, Patient First is an urgent care clinic where people go when they are sick. When they have injured their leg playing soccer, or hurt themselves on the job. And the doors aren’t accessible to people without two working legs and arms. Totally makes sense.

After that experience, I started noticing the doors at every single place I went to. 7-11? No Slurpee for you, young man using a cane. Old Navy? Nope. You didn’t think people with a disability should be able to shop for their own clothes, did you? Physical therapy? Nope — so angry about that one.

If I’m understanding things correctly, those of us with a disability, whether permanent or temporary, should only be able to visit the pharmacy and the hospital. That’s all we need, right?

Wrong.

If you’re a business owner, listen up. I don’t claim to know the first thing about the expense of disability-accessible doors. I’m sure there are building code and security issues as well. But what I do know is that everyone has a right to go to any business they like and be able to get in the door.

So what can you do?

  • Install a doorbell. A simple button that someone at wheelchair height can utilize to alert someone inside that he/she needs assistance. Go visit a gas station pump; you’ll see one there.
  • Utilize your greeter. So many businesses have someone standing or sitting at the front door to greet customers. Train them! Empower them to look for those in need and be ready to assist.

As a fiercely independent person, dealing with crutches and inaccessibility was very upsetting. For me, there was an end in sight, but plenty of others are going to be using crutches, canes, or wheelchairs forever. Please don’t lock us out.

Follow this journey on And Then You’re At Jax.

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How Online Movements Like 'Cripple Punk' Empower People With Disabilities

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I am a huge fan of the Internet, and have written about all it has done for people with disabilities. It’s helped us find each other and not feel so alone. By bridging the gaps in education, communication, and more, it has moved our society forward towards equality for people with disabilities.

The Internet is always ready to rally in the face of inequality. Some people are quick to say that tweets or Facebook posts using a hashtag don’t really do anything — they say nothing changes in the world because you tweet a hashtag 12 times. But I disagree; I think using a hashtag shows support to a community, to the families of those affected by what’s happening in the world. And that is not nothing.

I’ve been blogging and writing online for about six years now. I admit, I’ve only begun taking it seriously within the last year or two. I’ve used a few different platforms, trying to find the best place for me and my content. I’ve recently moved my blog back to Tumblr and found endless tags related to having a disability, including:

While these are all important, I found something really cool when I started seeing the tags “CPunk” and “Cripple Punk.” I didn’t know what the tags meant at first, but under them I found a wealth of blogs and content I wished I had found sooner. Tumblr doesn’t have a definition for their tags, so I did a Google search. Cripple Punk as explained on Urban Dictionary is:

Cripple Punk: also known as cpunk. A movement that is exclusively by the physically disabled for the physically disabled, started on tumblr. It’s about rejecting pity, inspiration porn, & all other forms of ableism. It rejects the “good cripple” mythos. Cripple Punk is here for the bitter cripple, the uninspirational cripple, the smoking cripple, the drinking cripple, the addict cripple, the cripple who hasn’t “tried everything.” Cripple Punk fights internalized ableism and fully supports those struggling with it. It respects intersections of race, culture, gender, sexual/romantic orientation, size, intersex status, mental illness/neurotypical status, survivor status, etc. Cripple Punk does not pander to the able-bodied. Rules:

  • Cripple punk is not conditional on things like mobility aids and “functioning levels.”
  • Always listen to those with different physical disabilities and different intersections than yourself. Do not speak over them.
  • Disabled people do not need to personally identify with the words “cripple” or “punk” individually to be a part of cripple punk.
  • Able-bodied people wishing to spread the message may only ever amplify the voices of the disabled.
  • Able-bodied people may never use uncensored slurs themselves and never censor our language.
  • Able-bodied people must always tag things like reblogs with “I’m able-bodied.”
  • Physically disabled people wanting to be a part of the movement who are uncomfortable using the slur may refer to it as “cpunk.”

I know not everyone will agree with this movement. But I think it is amazing. You don’t have to agree with everything a hashtag or an Internet movement brings forth, but as a means of finding something or someone you can relate to, I think it is wonderful.

What hashtags or Internet movements do you support?

This story was originally published on Cerebral Palsy News Today.

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Dubai's Sanad Card Offers Support Services to People With Disabilities

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Dubai, the most populous city in the United Arab Emirates, is giving out support cards to those living with a disability. The Sanad Card (Arabic for “to support”) is similar to the U.S.’s disability parking placards, but comes with other services meant to benefit people with disabilities.

According to Gulf News, cardholders are entitled to free parking permits; free public transportation; free entry to the city’s parks and sports clubs; free entry to conferences, clubs, and sporting events; discounts on medical, legal and dental services, as well as discounts on government-issued fees and services.

The city hopes to be disability-friendly by 2020. Currently over 1,000 people, out of an estimated 12,000 disabled people in Dubai, have registered for the card since its release in 2015.

“People should apply for the Sanad Card so the Community Development Authority (CDA) can build a database for people with disability. The database provides decision-makers in the CDA with detailed information about the people with disabilities and their needs, which will allow the authority to develop programs and services that match their needs in the emirate of Dubai,” Huraiz Al Mur Bin Huraiz, CEO of the social care and development sector of Dubai’s Community Development Authority, told Gulf News.

People can apply for the card online, in person or through the mail. Both the card and the application process are free to disabled residents of Dubai.

We want to know, what do you think? Would you want to see a service like this in a city near you?

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