What if any wheelchair could be transformed into a power wheelchair?
That’s the question John Damiao, director of the Power Mobility Program at The Center for Discovery, sought to answer. He works with children and adults who use wheelchairs, and grew frustrated that his students often couldn’t find a power chair that fit their unique needs, especially when it came to seating modifications.
So he decided to create a way to solve that problem: the indieGo, a universal device that rolls onto any manual wheelchair to convert it into a power chair.
And now, thanks to partnerships with the Center’s assistive technologies department and the Hurleyville Maker’s Lab, and a $1.125 million grant from Google.org’s Google Impact Challenge: Disabilities, the indieGo is becoming a reality. It’s currently being tested among residents at The Center for Discovery and is slated to be available to the public in late 2017.
“Whether the user uses a joystick or access switches, has a folding wheelchair or rigid wheelchair, the indieGo is designed to accommodate as many people as possible,” marketing lead Jason Kean told The Mighty. “We also understand the intricacies of having a device fit into someone’s life; that’s why we are designing indieGo to be highly portable so it can be easily placed in the trunk of a car or carried up a flight of steps.”
The three men behind indieGo – Kean, Damiao and project manager Mark McNamara – believe their product will redefine mobility.
“At the Center, we believe very strongly that everyone has the ‘Right to Move’ under their own volition,” Kean said. “indieGo is about enabling independent movement, regardless of wheelchair or ability.”
indieGo’s affordability, portability and open-source software open it up to a variety of applications.
“It can be an everyday power assist device for a manual wheelchair user in the community, a power mobility training tool for a rehabilitation center or hospital, a recreational device that can be shared for traveling long distances in a park, mall or museum, or a tool for learning and therapy for neuro-motor rehabilitation,” Kean said.
And it’ll retail for about $1,000 — about 1/7 of the price of a typical power wheelchair — making it ideal for both individual consumers and rehabilitation centers.
“indieGo is a device that is built to meet the needs of the underserved, to solve real everyday mobility problems,” Kean said. “By creating this device at an affordable price point, we are looking to give mobility to as many people as possible.”
That principle applies to access too; its controls can be adapted to each user’s abilities using joysticks, access switches and buttons.
Implications for the indieGo are broad, with an estimated 3.3 million wheelchair users in the United States alone and a power wheelchair market — too often plagued by sticker shock for consumers — projected to hit $3.9 billion by 2018.
McNamara summed up the premise of his team’s work in a promotional video:
“It’s going to blow the whole idea of wheelchairs out of the water.”
I just saw the amazing new Channel 4 advert released for the Paralympic games. It’s a great piece of filmmaking and beautifully choreographed. Check it out here.
As happy as I am to see disabled people portrayed in such a positive and innovative light (aka like normal people doing normal people things… shock! horror!), my heart also sunk.
I do not in any way want to take away from the amazing athletes who participate in the Paralympic games. Seeing the range of things disabled people now have access to is wonderful, and I only hope funding continues to offer support and accessibility to give people the opportunity to participate in anything they want. Disability should never stop someone from achieving or pursuing something they want to do. Although, we all know there’s still a very, very long way to go.
The problem I have is with the media.
This happens every time we have a Paralympic games, and it also happens in a much more general way when we think about how disability is often presented. It’s either unbearably terrible “misery porn” or, the other extreme, disability “inspiration porn.”
As someone with an invisible illness, I’m constantly battling to be believed. Two things about this frustrates me:
1. When we talk about disability in the media it is often about the “traditional” understanding of disability. This makes it difficult for people with invisible disabilities to be believed and understood because it is still not socially acceptable. How can you be disabled when you look able bodied? I will add the caveat here that it’s a lot easier to present visible disabilities in an advert because, well, it’s kind of obvious why.
2. The problem with this near-fetishization of disability that happens during the Paralympics is we don’t look at these athletes as what they are — exceptional athletes — but as models on which society expects all disabled people to model themselves.
The nature of my disabilities means the sports these athletes do are entirely out of my league. In fact, getting out of bed most days is a pretty big achievement. But we are told to look at these amazing people and, “If we just tried harder” or “worked more” or “believed in ourselves” we could achieve just as much. But, and I really don’t mean to sound pessimistic, it’s just not possible for all people all the time. We wouldn’t go up to a perfectly healthy able-bodied acquaintance and tell them if they worked hard enough they could be the next Mo Farrah or Michael Phelps.
Sometimes people like to send me links about people who are sick and have done amazing things. It often makes me feel like I’m underachieving, even though I push my body way more than I know I should (and am making myself more unwell in the process). That being said, I know a lot of people can’t do the things I do. It’s all relative.
So yes, let’s celebrate these exceptional athletes. Let’s cheer them on in Rio and marvel at their skills, strength, determination and talent. The Paralympics gives an unprecedented opportunity to look at the way we treat disabled people in society and the opportunities available to them – but let’s be more mindful about how we look at and talk about these issues. We may not all be Rio-level “superhuman,” but we’re all fighting in our own way. Even if it doesn’t take us to Brazil. Even if it just means we’re getting out of bed and having a shower.
Image via YouTube/Channel 4 (UK Paralympic Broadcaster)
Out of respect for my friends in law enforcement and not wanting to fuel the flames, I have stayed relatively quiet about my views on police violence. But as the mother of Emily, a little girl with autism and an intellectual disability, who is growing up in a violent and frightening world, it’s time for me to speak up.
Lately when I hear “Hands up. Don’t shoot,” I get tears in my eyes. It’s becoming increasingly difficult to not worry about how my daughter would react to a police officer pointing a gun at her. The fact of the matter is, she will run. I know many don’t understand why I would even worry about such a thing considering that Emily is such a sweet child. But, what most of you don’t know is that she can become violent when she is hurt. Or that she has a lack of awareness about the impact her behavior has on others. She doesn’t understand when people are not laughing with her, but at her. Her behaviors can become very dangerous if she is egged on.
While many of parents have told me that my positive outlook about my child is inspiring, I have to admit that in some ways, it is just an act. I do a terrific job of hiding my fear, anger, and sadness about my daughter’s life journey. Regrettably, the world is a very cruel and unkind place to those who have disabilities, especially those with developmental, intellectual, and psychiatric disabilities.
When Emily was in the second grade, I found her lying on her bed and sobbing. She was repeatedly crying, “I stupid.” Something had happened at school that made Emily realize she was different from the other children. A part of my soul died that day, as I realized I could no longer protect her from or keep her blissfully unaware of her reality; our overly perfectionistic, impatient and vain world won’t allow it.
Sadly, life is not easy for those who are in the minority. The challenges are real.
Several times a day I think about the way that a person’s disability will impact his or her life. As a mom it’s my job to help my daughter learn social and behavioral skills so she can be successful in life. As the executive director of a non-profit that empowers parents to advocate for their children with disabilities, it’s my job to positively impact the way society interacts with those who have disabilities. Often, though, I find that I am fighting an uphill battle.
Too often I have terrified parents call my office because a school resource officer has restrained or arrested a child with a disability who has done nothing wrong. Too often I hear the stories of distraught parents of a child with a disability who is suicidal because of school bullying. And nearly every school day, I learn of a child with a disability who has been traumatized at school or suspended.
Before we can tackle the issues that are plaguing society, we must recognize that a piece of the narrative has been missing:
• In the 2013-2014 school year, 11 percent of students on Individualized Education Plans (IEP’s) received out-of-school suspension, compared to 5 percent of children without disabilities. Twenty-five percent of African American male students with disabilities were suspended. It’s even more alarming when you consider that children on IEPs make up just 13 percent of the school population.
Shamefully, there is very little media coverage regarding the ways society is failing individuals with disabilities. Let’s face it — when you can’t speak, are scared of crowds, or don’t have the physical strength to peacefully protest, it can be very difficult to get the attention of the news cameras. So, hopefully, this post may reach a few who are willing to effect change.
The majority of our police officers are upstanding, caring, and courageous individuals. I am grateful to those who are willing to protect and serve. Unfortunately, though, it’s hard to ignore the data that shows that people with disabilities are being subjected to a disproportionate use of force by law enforcement officers. According to research, police violence against an individual with a disability is often a result of lack of understanding and awareness by well-intentioned officers. Let me offer a few examples:
• A person who is deaf may appear to be ignoring a police officer’s commands.
• An individual with an intellectual or developmental disability may not process an officer’s commands quickly enough and appear to be non-compliant.
• An individual with autism may flee or walk away from an officer.
• Individuals with a sensory disorder may become violent if touched due to sensory defensiveness that provokes a “fight or flight” response.
• I could go on and on and on.
There is a community of individuals, many who are nonverbal, that have a higher risk of being shot and killed by law enforcement. If things don’t change, my daughter could be one of them. It’s time we stop allowing others to politicize the issues, and instead demand an open and honest dialogue.
Police officers need to receive more training on how to recognize a disability, and subdue an individual who has one without using violence. Schools need to stop suspending kids with disabilities and instead use positive behavior management. Children with disabilities must be taught alongside their typically developing peers. If they are not, most will have difficulty learning, and may never learn, self-regulation, executive function and social skills.
And, our society needs to understand that behavior is a form of language. Our actions speak louder than our words — just ask any parent of a child with autism. Our society must show compassion, patience, and tolerance for those who have different backgrounds, needs, and challenges.
It’s easy to point fingers at the police, politicians, or protest organizers. However, I challenge you to stop looking to others to effect change, and instead, consider the actions that you need to take. We are all responsible for making the world a safer place for our children.
Nobody expects a detour in life to happen. It’s what happens when we think we have things all planned and figured out, and then we’re thrown a curveball.
I’ve survived a coma, organ failure and 27 surgeries and emerged triumphantly, so I’d like to think I’m used to curveballs. The most rewarding feeling in the world is to be able to use my unpredictable journey to help others navigate their own detours.
But when I’m at the crossroads myself, I’m always reminded how difficult it is to move forward when life doesn’t go as you expect, and what you thought wascertain suddenly veers in a different direction.
I always try to be transparent about things in my life because I’ve seen in my own experience that keeping things hidden never does any good. For years, I kept to myself, living in isolation, only speaking to my doctors and parents. It was difficult to function in the outside world without a stomach. Not being able to eat or drink was a pretty big isolating factor.
So I’ve experienced what it feels like to keep things in — painful emotions or even joyous moments of gratitude. Sometimes all we need to do is reach out to feel like you’ve been heard, and suddenly, we’re able to move on. In bringing a struggle to light, you’re helping yourself, and even better, you never know who else you may help.
So that thought outweighed my trepidation in sharing this major “detour” in my journey. I started the campaign, #LoveMyDetour, to help us all love the unexpected glitches in our lives. “Loving My Detour” is all about flourishing, not in spite of, but because of obstacles.
But sometimes, you don’t love your detour right away. Sometimes you just have to trust your detour, follow it and know in your heart that eventually you’ll love what happened to you.
I’ve written about having glitches, imperfections and finally finding a wedding dress to fit my ostomy bags after 27 surgeries. After I found a dress, I thought my wedding woes were over.
It came as a complete shock to me after only 11 months of marriage to find out I’m getting a divorce.
To say “sudden” is an understatement. I had just married the love of my life. I had asked my husband if he was happy, and he had reassured me he was — daily. We were deciding where to go out to dinner to celebrate our one-year wedding anniversary, which would have been in June.
Our last night together was spent hand in hand, eating frozen yogurt, confiding in each other and planning the days ahead. One last kiss and then the next week, I was hit was a succinct text message demanding a divorce with no alternative. He had ordered a marshal to come to my parents’ house to deliver my “papers,” and that was it. He shut his phone off, and the rest of the night was spent pacing around my parents’ kitchen table, crying so deeply I couldn’t breathe.
When life changes unexpectedly, we’re forced to question everything we thought we knew about ourselves. I’ve learned though my 27 surgical “detours” that trying to “go back the way you came” won’t get you anywhere. You have to move on — even if it hurts.
I tell myself that if I can get through a coma, organ failure and six years of being unable to eat or drink, then this, too, like everything else, will pass. We are all stronger than we know.
I still feel that by sharing our own detours, even if they’re not so great in the moment, makes us all stronger. So that’s why I share. Moving forward, trusting our detours, one day at a time.
I don’t have the power to change others, but I can take charge of my own path. I’m even starting to date again, but, of course, I think the one person who needs the most love right now is me.
No matter what “detours” we have in our lives, we’re all capable of pursuing our trails with a bit of support, even if the “support” we have may change over time.
I try to remember I have good friends, family and a truly good body that has been tried, tested and triumphant through years of medical interventions and setbacks.
Every detour leads somewhere. And I know that one day I will “Love My Detour.”
People sometimes tell me that as a special needs parent I am an inspiration. It’s a compliment, I think, but I never know how to take it. I certainly don’t feel inspiring. I do feel many things as a special needs parent.
1. Sometimes I feel tired.
2. Sometimes I feel elated.
3. Sometimes I feel chagrined.
4. Sometimes I feel baffled.
5. Sometimes I feel overwhelmed.
6. Sometimes I feel happy.
7. Sometimes I feel lonely.
8. Sometimes I feel strong.
9. Sometimes I feel weak.
10. Sometimes I feel “normal.”
11. Sometimes I feel so very different.
12. Sometimes I feel content.
13. Sometimes I feel jealous.
14. Sometimes I feel worried.
15. Sometimes I feel ornery.
16. Sometimes I feel jubilant.
17. Sometimes I feel confident.
18. Sometimes I feel deflated.
19. Sometimes I feel preoccupied.
20. Sometimes I feel relaxed.
But I never feel inspiring. I may act puzzled when you say I’m inspiring, because I’m just doing the best I can, getting through each day, as messy as that can be, and trying to make the best of things. I might not know how to answer when you say I’m inspiring because I simply see myself as a parent.
You were standing behind us in line, waiting to check out at Barnes & Noble. I had three kids in tow: a 6-year-old, a 2-year-old, and an 8-month-old. We had several books to purchase, as I tried to wrangle my impatient and rambunctious 2-year-old while futilely attempting to console my fussing infant. You let out an indignant sigh, and when I turned and locked eyes with you, you looked to your mother to protect you from my discontent at your action. She looked to me as if to say, “You should get a better handle on those kids,” followed by an ever-so-slight eye roll.
I was disappointed to see a fellow mother not use this as a teaching moment for her son. You see, I hadn’t been able to bring my infant out of the house to a place that isn’t a doctor’s office, hospital or a lab in ages. And the reason I picked Barnes & Noble was to search for books that could explain to my 6-year-old what it meant to have a sibling with an intellectual disability.
You are the reason I don’t often take my kids out. The disapproving and judgmental glances and scoffs are not what I needed right then.
People often whisper to each other when my son needs to be fed through his feeding tube. Most recently, my son was publicly pointed out and used as an example to define the word “misfit” to a few children. My heart has never broken before like it did that day, and my faith in humanity is slowly slipping away.
To that boy’s mother: You could have made a big difference that day by teaching your son to have patience with others. I know you’ve had your days — when the kids are being a handful but you need to buy that gallon of milk during a snowstorm, when it’s late and probably past bedtime. I know you’ve been there. Maybe not exactly where I am, but I know you’ve felt the same impatience, frustration, embarrassment and even anger when taking your kids out because you had to do it out of necessity.
So that day at Barnes & Noble, I was saddened to not have the opportunity to point out to your son what we were there to purchase. To not be able to make use out of our struggles to show you and your son why compassion and gratitude are such important traits of good character.
The thing is, though, I’m not asking for special treatment. I’m only asking for compassion and maybe some understanding or appreciation, for everybody has their own challenges. It isn’t just our family — it is also everyone around you, as well as yourselves.
If there are two things I wish more people would understand it’s those: gratitude and compassion. If you have a tough time grasping what true graciousness and compassion look like, that’s OK. Let’s begin by teaching our children that we never know what others are going through or what they are dealing with in any given moment. That’s the first step. I know one day they may be faced with their own struggles, and it will finally come full circle. We have to start somewhere, but scoffing behind a frazzled mom isn’t it.