It’s one thing to recognize an injustice, but it’s quite another thing to do something about it. But BE recognized a need for a better mobility device: one that people would be comfortable on, excited to use, and that would reduce the stigma and isolation felt by so many people with disabilities. So now we have the Alinker, and we’re able to witness the dramatic changes it has made in so many people’s lives.
But of course, none of that happened overnight. While the “aha” moment story may be familiar, the lesser-known side of things is the years of work undertaken to get to where we are now. “First of all I never thought about becoming an entrepreneur,” BE said. “I don’t think that happens because you have an idea to go and do that, start a business to make money or something. That’s not happening, only much later.” BE had an idea and a vision, but it would be four entire years before they materialized.
In the beginning, BE was “messing around with pieces of wire and some clay and pieces of cardboard.” She would spend hours observing and talking to people about their needs, their frustrations with their current mobility devices, and what they wished for if they were able to design something brand new. “I listened to a lot of people…I saw people hunched over, and I heard people talking about wrist and shoulder pain by either pushing wheelchairs, or pain from crutches.” Learning from her conversations with her mum’s friends and with people on the street, BE had a framework to build from: you have to be eye-level, you have to be safe and stable, and you have to be able to use your legs.
“I designed underneath those needs, which is an overarching frame with a seating assembly so you can sit while you stand,’ BE said. One of the biggest challenges came from the steering mechanism and placement of the wheels. It’s rare to see two wheels in the front. From an engineering perspective, it’s a much bigger challenge. But if the two wheels were in the back, people would kick into them while they were walking, and the tipping line for the device would be in the user’s forward momentum, so it would be much less stable. BE developed a general plan: an overarching frame with a seat, with a small wheel in the back, and two larger wheels in the front to push over obstacles.
“I had an idea,” she said. “I had some little mockup things, like that’s the concept of how it should work.” Armed with the concept, she got in touch with Toby’s Cycle Works, a metal design and fabrication shop in Vancouver, BC. “I came with a wooden prototype into Toby’s shops,” BE recalled. “He was like ‘Oh my god. It’s a woman, with a wooden thing, she wants me to translate that into aluminum, what the fuck.’”
“We developed this really funny relationship,” she said “Between the typical guy engineer thing, ‘make it straight because it’s cheaper,’ and this woman going ‘No it’s gotta be round!” But differences aside, they started prototyping. At this point, BE had a job, and was using her income to finance the development of this new device. After a few different iterations, they landed on what would become the very first version of the Alinker. ‘It was very wonky and it only had a piece of plywood saddle on it,” BE recalled. “I flew to the Netherlands, to my mum and was like ‘This is awesome! You’ve got to try this!’ And she was like ‘No way, I’m not going to get on that thing.’”
So her first potential customer was less than enthusiastic. But on that same trip, a friend of her mum’s, a man in his early 80s, dropped by for a visit and wanted to try the new device. When he got on the early Alinker, BE recalls, “Something happened in his face…he flipped around his cap and he leaned forward and he started running.” As she watched this man - who hadn’t run in 20 years - jog around the plaza, BE realized she was onto something. “With that feedback I was like, holy shit, if that can happen to a guy of 82, then maybe there’s more.”
At this point, after over a year of prototyping, BE felt confident to take the next step. The project she’d been on was coming to an end, and BE had received enough positive feedback on the Alinker that she felt ready to leave work, and go full-time on the Alinker. “After prototype four I thought, I really have something here,” BE recalled. “So I looked for investors. I had no idea what shares were, I had no idea what a company was, I had no idea how you can ask people for money. I had no idea how that worked. So I started studying. I did meet ups. I did a competition for small businesses for entrepreneurs, I dove right into everything.”
BE incorporated the Alinker in August 2012, but it would be another four years before any product actually made it to market. “When you search for something that is not in mobility aid shops, you very often see the coolest things in prototype, or in concepts, but they never make it to market because they can’t make it,” BE explained. “It’s either too expensive because it’s so cool, or they don’t have the money upfront to do the developing process.”
It’s a struggle she understands well. In the immediate years after incorporating, BE was putting all of her time, energy, and savings into developing the Alinker, but positive feedback doesn’t pay the bills. She had to quit her job, and with no income coming in, had to move. “Personally, it was a very hard time,” she recalled. “You pursue an idea that you think might be a great idea from the feedback that you’re getting, at the same time you’re the only one that has the idea, because nobody else sees it yet. So how do you sell an idea that people don’t see yet.”
But an encounter at a meet-up led to an introduction to her first investor, a retiree who spent his time making angel investments. “He said ‘I believe you, and I like you, I’m going to invest in you.’” He also brought three associates to the table, and over a number of years they worked together to develop a plan to bring the Alinker to market. While that was ultimately successful: three financing rounds did bring the Alinker to market, BE is careful to note that it isn’t all roses and butterflies when it comes to bringing a product to market.
She described those initial years as being plagued by uncertainty - a gnawing sense of responsibility to investors without even knowing if the product is going to work, compounded by having to deal with the doubts and discouraging comments of people who don’t entirely trust your vision, or your capacity to pull it off. “The comments that I got from mostly white guys in boardrooms were quite devastating,” BE said. “It was a very bad time. I was on antidepressants, I drank a lot of alcohol, I didn’t even open my windows at all. I will say as a sort of summary, the Alinker nearly killed me, trying to do that in those years. And at the same it kept me alive because I saw what it did to people. So it literally nearly killed me, but it also kept me alive.”
But importantly, the Alinker was now out in the world. BE first launched the Alinker in The Netherlands, through a crowdfunding campaign and a physical tour around the country, giving demonstrations with the bike. Citing Dutch people’s general hesitation to accept new products, she figured, “If they accept a product in the Netherlands, you’ll probably make it anywhere in the world.” And accept it, they did. Although the crowdfunding campaign was only offering pre-sales, Dutch people bought it up. Following that success, they launched a similar campaign in the US and Canada a year later. Again, only pre-sales. And again, people were willing to pay $2000 for even the hope of getting the bike. “I’ve been completely flabbergasted by the demand and the willingness to buy into something that has that hope,” BE said. “That has that vision to it, that clearly wasn’t there, otherwise people wouldn’t just jump to it like that.”
With the success of the crowdfunding campaign under her belt, BE now had a proven demand, if not exactly a sustainable revenue model. But that was enough to get Alinker selected as a SheEO Venture in 2017 (formerly SheEO, now Coralus), which offers a 0% interest-loan to women-led initiatives, and just as importantly, gives you the backing and support of a community of like-minded entrepreneurs and advisors. “I broke down in tears,” BE recalled. “I was like, this is going to change my life. Because then your whole world changes from guys saying ‘It’s a little bit too much risk for us,’ to being with hundreds of women that selected you, that want you to succeed.”
After the SheEO grant, the momentum started to grow. BE was able to access another large grant, and was introduced to Tania Lo, now her CFO and trusted business partner. “Then life started to really improve,” BE said. “The beginning of entrepreneur life, you have to do everything yourself. From finances to marketing to product development, you go through getting an on the job master’s degree in business administration in turbo speed. The moment you can start building a team, you feel that you don’t have to do everything on your own anymore.”
Now the Alinker is gaining ground, and the team is growing each year, and the community developed around the world has been incredible to see. But it’s still not without its setbacks. “It’s still very challenging to have this company,” BE said. “It’s ten years incorporated now, we’re making revenue and we’ve had a few really good years. The pandemic made it a little bit harder, because supply chains fell apart.” But we’re still here, and growing.
“Ideas are cheap and easy,” BE said. “People say to me sometimes ‘Wow, that's a really neat idea.’ And I say, ‘Yeah, ten years ago it was a really neat idea, and then it was ten years of really hard work and nearly doing the impossible to get this idea to a product that has made it to market.’”
Despite considerable obstacles, and the personal toll exacted by trying to make an idea into a reality, BE reflects on how her original vision and her work today are still motivated by the same goal: creating something that gives people hope. “That sounds corny,” BE admitted. “But for me what’s most exciting about the Alinker is that we get to talk about systems, and using the Alinker as a vehicle for change…What always guides me is justice issues. Always. In whatever I do, ultimately it’s always about justice. Being able to use my company as a justice tool, so to speak, makes me super happy.”
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I recently went to get groceries for only the second time since February 2020. I was so excited. My eyes were glazed over with anticipation. It was the first time I took Madiba, my Alinker, shopping to do groceries (it was a big day for us).
The most exciting thing was after about half an hour, I realized I COULD SEE THE TOP SHELF. It was the first time in 11 YEARS that I was able to see the top two shelves at the store. I just about cried. I should have taken a picture- with and without tears.
I’m tall, so spending the last ten years in a wheelchair took away a lot of stuff that I never thought of as part of my identity until they were gone. Seeing and reaching for something on the top shelf was a regular activity of my life. My mother is 5’ 3” and my entire adult life was about getting something from the top shelf when I visited.
Well, at least I was able to see the top shelf. But I doubt I’ll be reaching for it anytime soon. However, It was also the first time I saw how much the prices for groceries have increased. Ouf. That really made me appreciate Madiba and everyone who has contributed to my or anyone else’s campaign. It made me so thankful as I thought about all the Random Acts of Kindness over the last 2.5 years. Not just for me but for everyone who has experienced the Invisibility
Cloak of Disability.
I have really become so thankful to everyone who contributed to my campaign, and to BE for doing good by having crowdsourcing as an option. I love the Alinker community. Even if I’m not taking advantage of everything I know we are there for each other if we have any questions or we need support.
We arrived at the grocery store. You know how your regular grocery store eventually becomes as familiar as the creaks of your parents staircase?! Well, my regular shop had rearranged since February 2020. How dare they!! Did something happen in the last 2.5 years?! Jerks. Thankfully I had Madiba and my friend with me. I was ready for the challenge.
Bring it Sobey’s.
My friend chose to walk behind me because she was thoroughly enjoying witnessing how everything was just so awe-inspiring to me, how much fun I was having, as if it was my first trip to a grocery store. Ever (Imagine if she had taken me to something like Costco). She was getting a kick seeing the faces of everyone as they saw Madiba, and I.
(I’ve gotten to the point in my Alinker journey that I’ve started to become blind to the originality and coolness of my Alinker, so I’m somewhat surprised when people are so taken with my bright yellow buddy.)
Then, flushed with Post-Lockdown-Courage , we went next door to the dollar store (don’t tell my Mum) for some snacks and swag. The irony that I’m referring to items as swag is not lost on me. Trust.
My friend saw this little gem and thought it was perfect for me. Well, Wheelchair Me.
Wheelchair me comes out in the evening and at night. Even that is becoming too much for my liking. In fact, I’ve had to tell some of my friends and family that I need them to stop thinking of the possibility of taking my wheelchair on excursions or day trips. I’ve had to remind them that the point of getting an Alinker is specifically so that I can exercise and be able to do things beyond the nursing home (in more ways than one) that I wasn’t able to do in a wheelchair.
I feel like the wholeness of Melanie doesn’t exist IN a wheelchair, but WITH my Alinker. When someone sees me with Madiba, they see personality. My character is my own. My voice can be heard. If I’m in my chair, I have to resume the limited identity as Melanie-In-a-Wheelchair, the sibling of Disabled-Melanie.
Melanie-In-a-Wheelchair is most often frustrated and cranky. To be honest, she is a bit of a bully; Melanie-In-a-Wheelchair doesn’t have an identity. Melanie-In-a-Wheelchair is invisible to the outside world. Melanie-In-a-Wheelchair is often mistaken for Disabled-Melanie, who apparently only understands the English language when she is spoken to as if she is a small child.
I recently went for coffee with a friend of mine who also has MS and naturally understands how and why I love my Alinker, and how and why I have become hesitant to use my wheelchair beyond my ‘house’ at the nursing home.
We got our coffees to go and then we went to a park on the water. We sat on a bench in the grass (doing that in a wheelchair? Impossible) while we caught up. Then we walked along the water for about 20 minutes on different surfaces that I hadn’t yet tried. That was new and definitely a learning experience. It was a well deserved nap that afternoon.
]]>One of our team members, Sergio Robelto, has flown numerous times around the US, and back and forth to his hometown in Colombia, with his wheelchair. We spoke to Sergio about his experiences of flying with a disability, and with his advice we've put together this guide to traveling with a disability.
“The first times, I think, we’re probably the hardest ones,” Sergio said. “Depending on where you are in your journey, if it’s recent, if it’s not. When I first traveled, it was within maybe 6 months or a year of my accident, so I didn’t know how to think about my body.”
If you’re not only new to traveling with a disability, but new to living with a disability, you might not be able to predict exactly what you’ll need for an extended trip, or for the experience of sitting on an airplane. So it’s best to plan far in advance.
Talk to your doctor in advance of your trip to discuss any possible complications from air travel, as well as any medications / vaccinations, or additional medical equipment you may need. Obtaining a written note from your healthcare provider, while not necessary, can also be helpful in reducing hassle at security with medical equipment or medications.
Make a plan for the bathroom. “I know that there are planes where it’s big enough for you to go, but I haven’t experienced that,” Sergio said. “So you have to prepare for the bathroom, if it’s a long ride, you have to figure out how to stay for the whole plane.”
Many smaller planes used for domestic flights, and increasingly for international flights, do not have accessible bathrooms. Similarly, many domestic flights don’t have an onboard wheelchair unless it is specifically requested in advance. If your disability limits you from being able to walk to the bathroom, talk to your doctor about medical equipment, such as a catheter, that will enable you to remain seated through the whole flight if an accessible bathroom is not an option.
Familiarize yourself with the legislation pertaining to accessible air travel, so you’re ready to advocate for yourself should any conflict arise. In Sergio’s experience, most conflict with the airport or airline staff doesn’t come from any place of malice, but because they’re unfamiliar with your specific needs and the best way to manage them.
The Air Carriers Access Act (ACAA) applies to any US domestic flight, or flight to or from the US, and includes numerous protections for travelers with disabilities. It covers topics such as boarding assistance, bathroom-access requirements, wheelchair storage requirements, and more. It also covers complaint procedures should you find yourself in the unfortunate circumstance of having your rights violated.
In Canada, the Canadian Transportation Agency has published the Accessible Transportation for Persons with Disabilities Regulations, which covers similar topics for ground and air travel. They've also published "Take Charge of Your Travel: A Guide for Travellers with Disabilities" which is a fairly robust guide that will help both Canadian and international travellers plan their trip.
By law, necessary medical equipment is free to take on a plane and doesn’t count towards your carry-on items. Pack your carry-on with everything you’ll need with you in case of an emergency or long delays, such as necessary meds, your doctor’s notes, and medical alert information.
If you need to bring additional medical equipment for your trip in your checked luggage, inform the airline staff of the bag’s contents so you don’t get charged for it like regular luggage. “I started having two bags, my stuff, and then my medical equipment,” Sergio said. “But I just decided to get just one big bag, so I have to open it and show them that half of my stuff is actually mine, and half of the other stuff is medical equipment, so they don’t charge you for it. I take more medical equipment than my personal equipment.”
You’re not required to inform the airline in advance if you’re traveling with a mobility aid or require assistance, but it can be helpful in ensuring you get the assistance you need. “When you actually purchase the flight, you can put in there that you have medical equipment or that you have a wheelchair, that you are disabled pretty much,” Sergio said.
However, even if you’ve informed the airline in advance, it’s best not to assume they’ve planned for your needs, so show up at least two hours early for your flight and give yourself plenty of time to navigate the airport. “When you get to the airport, the first thing is to check in and let them know that you are going to need assistance,” Sergio said. “Let them know whether you are going to be able to walk to the plane, or if you need an aisle chair to be able to get into the plane.”
Once you’re checked in, the process repeats itself at every step. “Check-in, then you go through TSA, and with TSA it’s easy because there’s a door you go through. It’s not fast, but it’s easy. You get to the door right away, but then you have to wait for somebody to pat you down, to pat your chair down. So that usually takes some time for somebody to come and do that. And then you get to the door, and you do the same process. It’s the same process three times.”
One of the biggest issues with air travel and disabilities is damaged or lost mobility devices. While airlines are responsible for repairs or replacement to damaged and lost mobility devices, the process can be lengthy, which isn’t very helpful when you get off the plane on the other side and don’t have your device available. “I’ve been very blessed that I haven’t had any of my wheelchairs broken, but I have had a lot of friends who have had their tires broken, their handlebars,” Sergio said. “Even for us to get it fixed for our insurance, sometimes it takes months.”
Most airlines will recommend you transfer to an airport chair at check-in, so they can check your wheelchair. This isn’t necessary, and you are free to say no. “I never let go of my chair,” Sergio said. “They suggest you take the airport chair, but I say nope. I’m unable to walk, I’m not getting out of my chair.”
You are legally allowed to keep your own mobility device with you right up until you board the plane, and doing so is the best way to ensure your device gets to where you’re going safely.
“You get into the plane, they bring the aisle chair. I transfer to the aisle chair, then I take all the things from my wheelchair that I don’t want to break or anything,” Sergio said. “I put them in the bag that I have with the medical equipment, and then they take the chair down. I let them know that I need my chair right away, so that’s the last thing that they put in the plane.”
“The airport is stressful. The staff want to help but they don’t really know how to,” he said. “They do sometimes have ways that they want to do things. But it’s not necessarily the best way, it’s just ways for them to not be liable. So I’m like, I know that you have one way to do it, but if you listen to me, we can do it easily and it’s going to be safe.”
Traveling with mobility issues can definitely be daunting, but knowing your rights, being prepared, and advocating for yourself will be the best way to ensure your trip goes as smoothly as possible.
]]>How do we uphold an inaccessible world? This was the topic of an earlier community Zoom conversation we had with the Alinker family, and special guest Maayan Ziv from AccessNow. How do we, not just as able-bodied people, but also as people with disabilities or various identities outside the mainstream, contribute to inaccessibility. How does our internalized ableism continue to uphold the structures we are trying to fight, and how can we move past that?
BE, by way of example, discussed how internalized ableism can prevent you from responding the way you wish you could respond when confronted by criticism or meanness. “Every time I go as a gender weirdo to a toilet, I get called out or called names. And I can’t escape that,” BE said. “Every time I come home, and something happens like that, I don’t have the response yet to hold my own, and to not be affected. It affects me when somebody says ‘pervert.’ I don’t have my response, it impacts me, and then what happens is I beat myself up for not having responded in the right way. So it hurts me double.”
Not knowing how to respond when confronted inappropriately is a burden that is consistently-and unfairly-placed on people with disabilities. When your identity or ability falls outside of the mainstream, able-bodied people often ask inappropriate questions or force you into a conversation that is more personal than the context should permit.
Sergio, one of our customer service representatives and a regular wheelchair user, relayed a story in which he was helping his cousin work on her car, when he noticed a guy in a pickup truck slow down and start circling the lot where he was working on the car. The guy eventually parked and walked over and asked Sergio if everything was okay, as if to suggest that he wouldn’t be able to work on the car in a wheelchair. When Sergio responded that it was under control, the man then asked “What happened?” indicating towards his chair. By asking this, he was forcing Sergio into a position where he could either lie, or embark on a deeply personal conversation with a total stranger. Ultimately, Sergio just pointed towards the car and said, “the battery died.” The man got the point and walked off.
These kinds of interactions with the general public put the onus on the person with the disability to maintain their composure when backed into a corner, an emotional burden that just isn’t realistic at all times.
“I would say that it’s like a practice,” said Maayan. “I want to say that in general I get better at it, but it really depends on the day. If I’m having a really hard day and there’s a lot going on, my patience is limited in terms of how much capacity I have to hold myself and stop and remind myself, that person might just not know, or that person hasn’t had an opportunity to be educated…I try to navigate the intention, and if I feel safe, I might answer.”
Ziv and a few others discussed being asked about their mobility aids by young children, who are coming from a place of innocence, but are then corrected by their parents who have been socialized to not discuss disability. “What I find interesting about those instances is that parents are often grabbing their kid and saying ‘No don’t ask, don’t look, don’t talk to them,’” said Maayan. “And that’s the moment where this little kid, who’s just forming their ideas about the world, is now told that disability is awkward and uncomfortable, and is told ‘We don’t even talk to them, we don’t ask those questions.’”
But when you simply respond to a kid, say something like “this is my wheelchair” or “this is what my forearm crutches are for,” and so on, kids basically just say “okay,” and shrug it off, and in its in these moments that the parents, too, realize these conversations are not as terrifying as they’d thought. It’s having these conversations without the buffer of children, though, where the challenge can be, because the curiosity that adults have about disabilities does not come from the place of innocence, but rather fear.
“People are uncomfortable around disabilities, because they feel like, ‘Oh that can happen to me too, and then who am I,’” said BE. “In the divisive way that we’ve made the separation of the disabled here and the not-disabled there, it has become a scary place. So how can we show up to make it less scary. Because we’re all disabled, just not yet.”
Maayan echoed that sentiment. “Unlike a lot of different kinds of identities that people may carry, first of all disability is universal and anyone can join the community, or the population rather, at any time,” she said. “But more so I think that disability, whether you’d like it or not, presents a form of vulnerability that other people recognize. And vulnerability is an interesting thing because it does allow for honesty. It allows people to shed layers, and bring people closer in, and that’s how you build authentic relationships with people.”
The wife of one of our community members, Richard, who has MS, says his mobility aids have not been a burden in public, so much as they’ve created opportunities for conversations with strangers that they may not have had otherwise. “We’ve just noticed that people are curious, and if you’re open to it, if you open the door for them to feel comfortable to ask those questions and not feel like they’re being inappropriate…it is a good opportunity to make them realize, he can have a conversation and interact.”
While it’s important to have these conversations, it’s also a burden placed on people with disabilities to constantly be in the position of being an advocate. “Sometimes there is a moment where we can recognize that we have a role whether we want that role or not,” said Ziv. “Because we have an opportunity to educate. We don’t have to choose it, every time, but we have a choice, when we feel it’s right, to educate, to advocate, to help people realize that it’s okay.”
In order to build the world we want, and stop upholding the structures of inaccessibility, we need to stop viewing vulnerability as a weakness, and instead view it as a strength.
“Vulnerability is in fact the way that we connect,” said BE. “I dream of a world where dismissed people are the leaders of tomorrow. Because people that are dismissed are confronted by life, they actually know a little more about life.”
]]>But when she and her husband, Michael, received her Alinker and set it up for the first time, the reality was a little different than what she’d envisioned. “We got it, we put it together, very excited. Took it out, and it took me over thirty minutes to walk one square block in Chicago. When I got back in the house, I was just demoralized,” she said. “I was just like, ‘Oh my gosh, this is not what I thought it would be, this is so hard.’ It took me longer to walk on the Alinker around the block than it took me to walk with my crutches, essentially. And so I was really unhappy about it.”
Eileen recounted the struggle of the first few weeks with the walking bike. Her legs don’t work well as a long-term impact of paralysis caused by West Nile virus. Between her inability to move the Alinker easily across most surfaces, and the pain from getting used to the seat, she was bumping up against the 30-day trial period and feeling ready to give up on the Alinker and return it. But she brought the Alinker to the gym, a facility connected to a hospital where a number of doctors and other health professionals work out, and it was their optimism about the Alinker that convinced her to keep it after all.
Once she’d decide she was keeping it, she and Michael set about making adjustments that would make it more comfortable. They bought a gel seat, biking underwear, chamois cream, and quickly learned that jeans do not make good riding wear. And then she started practicing.
“I just kept working at it,” she said. When the weather turned wintry, they started bringing it to an indoor track to practice, and she would just do little bits every day, slowly building the muscle and stamina required to comfortably use it. Now, four years later, she’s gone from taking an hour to walk one block, to being able to walk a mile in 22 minutes.
Eileen’s story is a great example of why we say “when design matches your determination.” The Alinker is designed to enable more people to access mobility and independence, but it’s not an overnight solution. It takes work and commitment. “I just imagined that this was just going to be life changing,” Eileen said. “And in fact it has been, but it took a while. It has been a process for it to be life changing.”
Eileen still struggles with uphills and steep declines, but has worked out a system with her husband where he can push her a bit on the uphills, and hold her waistband on the downhills. “There are times when he has to help me out, but it’s been life changing for him too,” she said. “He no longer has to be the one to be responsible for my being able to move forward, and being able to negotiate places.”
In the four years she’s had the Alinker, Eileen has used it daily. Trips to the store, to the gym, on numerous trips around the world, and to social events where she’s delighted that she can walk around and mingle, no longer having to sit in the corner waiting for people to come talk to her. “I may not be able to go as fast as I want, or get everywhere, but if we’re going out, just even to the store, I use it…I feel like it is that freedom.”
When asked whether she had any advice for people just starting out on an Alinker, she was specific: “Don’t wear jeans. Don’t wear jeans.”
But also had some sage advice, beyond just the kind of pant seams you’ll want to be dealing with. “You probably have a vision that’s not realistic initially,” she said. “And so the reality of the situation is going to be different than what you thought it was going to be, and you just have to continue to work at it, and work hard at it. And just don’t give up. Hopefully you’ll be surrounded by people who support you, and just keep trying.”
]]>I’ve been living in a facility for 12 years. I moved in at 39 and I’m 50 now. I was never sure what career or field I wanted….but I know living in a nursing home wasn’t part of my plan.
In 1999 I moved from Montreal, Canada to Charlotte, North Carolina. It was for a guy. I was 26 and in love. Surprisingly (read: sarcasm), it didn’t work out.
I take that back, it did work out. Not the relationship part, though. The long distance part of the relationship convinced me I was in love. The everyday part of the relationship convinced me we were better apart.
In order to stay in the country I needed to continue my education on a student visa. So that’s what I did. I was a graduate assistant, getting my Master of Arts in Organizational Communications. My job? I ran the international dorm for one year and the co-ed freshman dorm for three years.
If only I had known then that running the freshman dorm was preparing me for living in a nursing home. In my experience, community living isn't that different in any form, no matter the generations. Same amount of preconceptions and misconceptions, same amount of drama, same amount of sex, but with more mobility aids.
I came back to Canada, after I had been diagnosed with MS and my health rapidly declined. I moved provinces to live with my mum for four years after supporting myself and living on my own for 20 years. It was a difficult time for us both. On July 1st, 2010, I moved to the nursing home where I live now. It was another huge change, but I was thankfully familiar with community living.
People feel bad about loved ones, or themselves, moving into a nursing home. They often associate moving into Long Term Care with giving up, with the end. No one wants to live in LTC. It is a necessary evil (interesting fact: many couples prefer to have separate rooms, in separate houses).
I was in shock at the beginning because the staff are there to help YOU. It took me a long time to be able to ask for help and not feel guilty about it. It has only been in the last few years that I will buzz for the staff at night to fill my water bottle.
I have found that there are certain other things it has taken a long time to get used to. I’m much younger than most people here. Having moved in here at the end of my 30s, I was surrounded by residents who were twice as old as I was. The generational differences were so different to anything I was used to. I had also grown up in a big city while most people had grown up in a rural area.
It took me about six months to settle in as much as I needed to to get by. But It also took staff and administration about six months to accept my generational ways and needs. I was one of 155. But I deserved person-centred care as much as any other resident. I was, and still am, closer in age to the staff. But many facilities have protocols about what staff can or cannot do for or with residents. Although I was making friendships with my generational peers, our friendships had strict boundaries. Meanwhile I was making friendships with my housemates, but we had little in common.
People often ask me similar questions about what it’s like living in a nursing home at my age. They wonder about my privacy, or my personal space, about only having a bedroom to myself (Hey, at least I don’t have a roommate; It’s safer for everyone). The lack of storage is a regular issue for me. I purge all the time. But it always feels like my stuff just keeps multiplying. No, apparently you don’t need a full sized apartment or house for stuff to collect and multiply.
Some people are intrigued by the social aspect. What about the different personalities, especially those I don’t like? If you have had roommates or siblings, or have renovated your house, you know how I feel. I try to put up with it. I started painting, I watch a lot of movies, I try to get off site as much as possible. I volunteer, I join committees. I advocate for change (I don’t think I should whine about something if I’m not willing to make an effort).
This is how I know that I moved to North Carolina for a reason. Not for some silly boy, rather to find my school and get to study organizational communications (communicating the message you want to communicate, to a specific audience). I will always speak my mind but with my background, I know how to do it effectively. Strategic planning, critical thinking, change management, and writing, have been exactly what I’ve needed to advocate.
As someone with a disability, or a caregiver, the people who really need changes in the system(s), simply don’t have the time, energy, opportunity, or skillset to pursue change. That’s how I know that I was meant to go to North Carolina to find my school and my program: I have the skill set, I have the time, desire, and the ability to stand up and fight.
A popular question about my life in a nursing home is how I deal with behavior issues. For real, my patience and my tolerance is tested almost daily (I admit my angelic halo was purchased, not earned). Dealing with behavior issues is a constant challenge. Rationally, I know behavior issues most often result from broken brains. But I constantly fight the thought that ‘you should know better’. I’ve educated myself on different types of dementia or other illnesses just to understand and perhaps ease frustrations. It doesn’t always make a difference.
Sometimes, though, my knowledge about behavior issues doesn’t manage to outwit me and I have to go to the cafe across the street, make a long distance call, or I simply give up, go to bed and cry myself to sleep.
A reality of living in Long Term Care is, simply put, death. Over the last twelve years, I’ve lost way too many friends. I seem to have become quite stoic about death. Often, since this is a continuing care facility, not a retirement home, most friends I lose have a horrid quality of life already, so I’m often relieved when someone passes. This makes it easier.
Yes, I’m sad. Yes, I miss them. But it’s easier knowing that wherever they are, whatever they believe in, there is a dance floor with a live band waiting for them. And maybe an Alinker to boot around outside.
Do I regret moving in here? No. It’s given me relationships I probably wouldn’t pursue. It’s made my degree worthwhile, which has in turn kept my sanity concentrating on challenges, knowing that what I’m doing helps others. It has given me opportunities that I may not have otherwise.
Change is inevitable, I know that. But it isn’t all bad. Some changes are bad, but some are good as well.
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Guest writer Melanie Gaunt has been kind enough to share her experiences with us. To read more about Melanie and her advocacy, check out her bio here.
Photo by Matthias Zomer.
]]>Exercise is great for your physical, mental, and emotional health. It helps prevent a number of common illnesses, reduces stress, boosts mood, and is generally wonderful for your overall well-being. However, getting an adequate amount of exercise when your mobility is limited can be a challenge. Fortunately, there are a number of strategies and activities you can undertake to stay active, healthy, and happy, even with your mobility challenges.
Members of our community who were told they would never walk again have been able to take a few steps or walk across a room. Other people who had been homebound for years have been able to go for walks with their family again, and access outdoor spaces again. We don’t consider mobility issues to be a body with a problem, we focus instead on what we can still do, instead of what we’ve lost. If you’re facing mobility limitations, exercise can seem daunting, if not impossible. But with determination and patience, we believe you can get there.
Talk to your doctor
Start by talking to your healthcare provider or physical therapist to get medical clearance, and to develop a program that will work with your specific needs.
Start small
No need to rush into things! If you’re just beginning to exercise again after a long hiatus, or with a new injury or illness, give yourself plenty of time to adapt. Start with 10-20 minutes per session, or even per day, so you don’t overdo it and burn out. Any exercise at all is better than none!
Set realistic goals
Setting both long-term goals and short-term goals is a great way to motivate yourself to keep at it, but also to make sure you don’t try to do too much, too quickly. So maybe your long-term goal is to walk a 5K. That’s a great plan to work towards! So then set yourself short-term goals, like walking across your living room, then to the end of your driveway, then the end of the block. Setting manageable goals is a great way to both build up your strength and capacity gradually, but more importantly to build your confidence so you don’t get discouraged.
Make exercise part of your daily routine
Just as we all know it’s hard to break a bad habit, it’s also hard to develop a good habit. In fact it takes most people about two months to form a new habit. Set aside time for exercise, ideally at the same time each day, and stay consistent. However, don’t be hard on yourself if you fall off the routine for a few days, or even a few weeks. Feeling like you’ve failed just because you took a break is a common reason people quit exercising entirely. Don’t consider it a failure, just start again when you’re ready and get back to your routine.
Make it social
Being part of a healthy, active community is an incredible motivator, and has really positive implications for your mental health. See if there’s a walking group you can join in your neighborhood for people with mobility challenges, or join a group fitness class for people with disabilities, such as aquafit.
If you’re mostly homebound, consider joining an online group fitness program. We also have an online instructional program called the Alinker Academy, which provides training on a variety of exercises you can do on our walking bike. Check out the How it Works page if you’re unsure what a walking bike is, and whether it could work for you.
The specific exercises you can do will vary depending on your particular physical capabilities, which is why it’s important to talk to your doctor or physical therapist to ensure you develop a program that’s right for you. However, there are a few general guidelines that everyone should keep in mind.
Warm up and cool down!
No matter what kind of exercise you’re doing, it’s critical that you warm up and cool down afterwards to avoid potential injury, and get the most benefit from your workout. Start and finish your workout with light activities such as arm circles and shoulder rolls. Stretch lightly before your workout, and save the deeper stretches for cool down when your muscles are warmed up.
Mix it up
Broadly speaking, most exercises can be divided into three categories: cardio, strength, and flexibility. According to the US Department of Health and Human Services, all adults (regardless of disability) should get at least 150 minutes (2.5 hours) of aerobic activity per week. Any activity that gets your heart rate up is considered aerobic activity, so if you can’t walk yet or for very long periods, focus more on strength exercises that will increase your heart rate. Flexibility exercises, such as stretching and yoga, can help prevent injury and engage muscles that you may not be able to use for strength or cardio.
Don't overdo it
One of the most common things we hear from our community members when they’re starting out on their walking bike is that their head wants to do more than their body can. Listen to your body. If you’re experiencing consistent pain, lightheadedness, nausea, chest pain, etc., take a break or end your session for the day and resume later. Building up your strength and stamina takes time and a lot of patience, don’t push yourself further than your body wants to go, you’ll get there on your own time!
Have fun!
Exercise is challenging, but the short- and long-term benefits of maintaining an active lifestyle far outweigh the immediate frustrations of starting a new routine. There will always be good days and bad days, but try not to be too hard on yourself on the bad days, and focus on the long-term goal of living an active life, in community with other people.
Access to mobility, to community, and to a healthy, full life is what motivates our work. However, for many people living with a disability or chronic illness, finances can be as much of a barrier to community as their illness or injury itself. Having to pay for additional expenses like mobility aids, home care, and medication, while on the limited and fixed income of disability assistance, forces many people into medical poverty.
We want everyone who could benefit from an Alinker to have access to one, which is why we’ve worked hard to build this community of generosity and mutual support, and created a system that can offer anyone, regardless of income or insurance, the opportunity to get an Alinker through a crowdfunding campaign.
Signing up for a crowdfunding campaign can be intimidating. There is a lot of vulnerability that accompanies putting yourself out there in such a public forum, and maybe you don’t think you have a large enough community for your campaign to be successful. Our Campaigns Manager, Stephanie Sleight, understands these feelings all too well, as she was introduced to us when she signed up to be our 100th campaigner back in 2020.
“I had been looking at the Alinker for a couple of years, probably since it initially came out. I had been wanting to get one, but it was one of those things, I just couldn’t really afford it,” Stephanie said. “At that point they didn’t have the campaigns, or any of the rent-to-own or any of that kind of stuff going on, so I just kind of put it on the back burner.”
But in 2020, significant changes in her life led her back to the Alinker. “Basically what happened is my life kind of self-destructed, and I suddenly found myself all by myself and needing to find a way to be able to move around,” she explained. She had recently moved from Florida to a small town in Arizona with her partner, who had been her primary caregiver to help with her mobility challenges for a number of years. But not long after settling in Arizona, her partner experienced some serious personal issues, and left. “So I was in a brand-new town, didn’t know anybody, didn’t have any friends, didn’t have any family, nothing,” said Sleight. “So I was like, shit, I need to find a way to get mobile, because I’m screwed.”
“I was at a horrible low point in my life, feeling really isolated and really depressed,” she said. “I wasn’t sure about campaigning but I thought, what the hell, probably no one will donate. At that point, the few friends I had were all economically challenged, I know they couldn’t really afford to donate to me, and the only living family I have left is my brother. But when I reached out to Alinker they were very encouraging to me and told me to give it a try.”
Stephanie’s campaign was ultimately successful, and through her regular communication with BE, led to her joining our team, first to host Instagram Live sessions on Indigenous issues throughout the pandemic, and later as our campaigns manager.
Her experience with her own campaign informs the approach she takes to her work. One of the biggest hurdles new campaigners face is the fear that nobody will donate to them, because they don’t have a big enough community, or don’t feel comfortable asking their friends. It’s a sentiment Stephanie understands well.
“People get tired of you saying, ‘no I can’t do that I’m not physically up to that’ or whatever. And a lot of people don’t know how to deal with you once you become disabled, and you know, get uncomfortable,” Stephanie explains. “And so a lot of friendships go by the wayside, and the few that you have, we’re so often forced to rely on our friends for help in other areas, that it feels hard to ask them to donate as well…So you feel like, they’re all going to be tired of being asked to help.”
But upon launching her own campaign, Stephanie discovered that not only did her own family and friends want to offer support, but a wide community of strangers did as well. “People want to help,” she said. “More than you realize that they do, and this gives them an opportunity to do it, so it’s a win-win for everybody.”
Over the last several years, Stephanie has become an integral part of the Alinker family, and she’s able to build on her own experience to encourage others who may still be hesitant about whether Alinker is right for them.
“That’s one of the things that I love about working with the campaigns,” she said. “To be able to work with campaigners who are in that same space I was in, two and half years ago, and to say, I know this can get better for you. I know that this device can help your life, I know that this community can help you feel less isolated, to help guide them through that process and help them get there is just so rewarding to me.”
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Please check out our campaigns page to learn more about our crowdfunding program and how it enables access to mobility, community, and a healthy, full life, for anyone who needs it.
If you're in a position to donate, we encourage and appreciate any donations to our collective campaign, which enables us to complete the campaigns of new applicants who may not have enough community to get there on their own.
While it’s beyond our scope to list every single accessible trail, we’d like to offer some tips on how to find accessible trails near you, wherever you may be.
There are a number of great apps and online trail guides that allow you to search specifically for accessible trails. Here are two of our favourites:
(Article continued below video)
Disability-Specific Resources
National park services have federal mandates to provide accessible areas in both the US and Canada. The park board websites are good starting points to plan accessible outdoor recreation.
State and provincial park boards also provide accessibility information on their websites. We can’t link to every state and province in the US and Canada, but if you search “[state or province name] parks accessibility” on Google, it will take you to their respective accessibility guidelines page.
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We’ve designed the Alinker for who we want to be: healthy, active, and engaged people. Loss of mobility can be physically and emotionally devastating, which is why we focus not on what is lost, but what is still possible.
To learn more about the Alinker walking bike, and how you can maintain (or regain!) your mobility and independence with a disability, check out our How it Works section, or subscribe to our newsletter.
Happy trails!
]]>At its most basic sense, limited mobility refers to any physical impairment that impacts a person’s ability to move around freely, easily, and without pain. Limited mobility can be a disability that affects a person’s gross motor skills, such as their ability to sit independently, stand, balance, walk, run, swim, or do any of the movements that engage the large muscles of the legs, arms, and torso.
It can also refer to any disability that impacts the fine motor skills, which involve the muscles of the fingers, hands, wrists, toes, feet, and ankles. An example of this would be losing the ability to lift your foot, grip, or manipulate objects by hand.
Mobility impairments can result from a wide range of conditions, including chronic diseases, viruses, neurological disorders, injuries, obesity, lack of physical activity, and aging.
While it would be well beyond the scope of this page to list all of the causes of limited mobility, some common conditions that we see in our community, that create loss of mobility, include multiple sclerosis, spinal cord injuries, arthritis, chronic pain, diabetes, and amputations.
People living with disabilities are the world’s largest minority. The WHO estimates that about 15% of the global population (around 1.1 billion people) live with some form of disability. In the US, the figures are higher. The CDC reports that 26% of American adults have some type of disability. For mobility issues specifically, 13.7% of American adults have serious difficulty walking or climbing stairs.
With an aging global population, increasingly sentient lifestyles, and lack of access to adequate nutrition for much of the world’s population, the number of people with disabilities is set to increase dramatically in the coming years.
When many people think of people with mobility issues, they think of elderly people, or they think of people in wheelchairs who are paralyzed. But mobility impairments can happen to anybody, at any age. They can be visible and obvious, or completely invisible to an outside observer.
There is also a wide spectrum of mobility impairments, and many people who have mobility issues don’t use mobility assistive devices 100% of the time. For example, over one-third of wheelchair users are ambulatory wheelchair users, which means they can still walk some of the time, but they also use a wheelchair. The lack of understanding around ambulatory (or occasional) wheelchair users results in those individuals facing harassment or stigma, because they are accused of “faking it” when they get up from their chair.
To live compassionately, and not further marginalize or stigmatize individuals with disabilities, we should never make assumptions about another person’s abilities.
Losing your mobility can have serious consequences for your physical, mental, and emotional health. Adults who experience loss of mobility can lose their ability to independently provide for themselves, both financially and in terms of accessing their basic needs.
Many people with mobility issues are unable to work, and in the absence of other means of supporting themselves, end up in poverty as a result of their disability. Lack of mobility also makes it extremely challenging to access basic needs like food and medication, or to take themselves to doctor’s appointments and other necessary activities. As a result, many people with mobility difficulties are unable to live independently.
Beyond basic needs, living with mobility issues makes it much harder to attend social engagements, maintain friendships, and emotionally engage with the wider community. The impacts of this can be devastating for people’s mental health, and people with mobility issues report significantly higher rates of loneliness than the general population.
Some disabilities are temporary and may go away with time, exercise, and proper nutrition. Some are permanent and regressive. Either way, physical disabilities are extremely prevalent, and mobility is critical to our well-being, so we need to enable equal access to society for people with mobility issues.
For us at Alinker, that means creating a walking bike that enables people with mobility issues to continue walking, continue getting exercise, and in doing so continue living independently and engaging with the community. But it also means much more than that. It means building a community around access: access to food, access to recreation and culture, access to friendship, access to mutual respect and care.
Please check out our guide on How to Be a Better Ally to People with Disabilities if you’d like to learn more about this last point. If you or someone you know is living with mobility issues, check our How it Works page to learn more about our walking bike and our philosophy to see if it could be a fit for you.
]]>We designed our walking bike, the Alinker, to provide an alternative to wheelchairs for people with mobility issues, but who still have some ambulatory capacity. Read on if you think a walking bike might be a good solution for you!
From engagement with our community, we know that we have Alinker users with a wide variety of issues that have resulted in their reduced mobility. These include, but are not limited to:
This list is non-comprehensive, but can give you a general sense of the types of issues that may make a walking bike a suitable alternative to a wheelchair. At a very basic level, we say that the Alinker can work for you if you are at least able to do the following:
The Alinker can also be a great part-time solution for people who regularly use a wheelchair, but have the determination to practice standing and short-distance walking.
Is it hard to use a walking bike?
It takes practice, but with determination you can absolutely get it! We designed the Alinker for people who want to maintain a healthy, active, an engaged lifestyle despite their disabilities.
When you begin using the walking bike, you'll likely be engaging muscles that you haven't used in a while, and fatigue can happen quickly. We always encourage our customers to start slowly. Practice in your living room until you get comfortable on the bike. If you practice daily, and start with short sessions, you'll gradually build up the muscles and neural pathways that will allow you to go longer and long distances.
When should I start using a walking bike?
This depends on your specific situation, but in general we say that the sooner you get on the walking bike, the better. This is particularly true in the case of degenerative diseases. Since the Alinker allows you to continue to using your legs for longer than you would in a wheelchair, you are able to maintain your muscle mass and maintain the neural pathways that enable you to walk.
If you've gotten this far and you think the Alinker could work for you, then it probably can! Check out our How it Works section for video instructions and more info!
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Talking to people with disabilities should not be any different than talking to people without disabilities. Disability does not define a person, it is a part of their life. And furthermore, an estimated 15% of the world's population (approximately 1.1 billion people) identify as living with some sort of disability. In the US, that figure jumps to 1 in 4 people. One would think we, as society, would know how to discuss the subject comfortably.
Unfortunately, stigma, fear, and lack of awareness around disability has a resulted in a culture where many people are just unsure how to approach the subject of disability, and do not know how to comfortably talk to someone who is visibly disabled.
So we asked a few members of our community, who are primarily wheelchair and walking bike users, to identify a few things they appreciate, or do not appreciate, when interacting with the public.
Here's what they had to say:
1. Don’t look at us with pity. The last thing we want is pity, we just want to be acknowledged as human.
2. Do enter into conversation with us to see what our specific needs are, what language we prefer, etc. People are open to talking if you ask politely!
3. Don’t ask our caregivers/friends what our needs or issues are. Say, if we're in a restaurant, don't ask our friends what we'd like to order.
4. Do speak directly to us. Include us in the conversation, make eye contact! Just because we use a mobility aid, it doesn't mean we don't want to be part of the group.
5. Please don’t call us “brave” or gush about how “inspirational” we are. We’re just humans navigating life a little differently.
6. Do let your children speak to us. Children are curious and their questions come from a place of innocence. They should be taught that it’s okay to talk to people with disabilities and ask questions.
7. "Don’t tell me not to go too fast in my wheelchair, in case I get a ticket. I know you think this is a funny joke, but listen, it just isn’t."
8. Do continue inviting us to events and hangouts, even if we can’t always show up.
9. Re: the last post. Please do consider the accessibility situation of the events you invite us to. It’s great to be invited, but it’s less fun if we show up and can’t get past the front stairs.
10. Do not (and we repeat, do not) pat us on the head because we're sitting in a wheelchair. We are not dogs.
11. If you see us struggling, do politely ask if we need assistance. A friendly offer is always welcome! But if we say we’re good, please don’t insist!
12. Also, and very importantly, don't treat people with disabilities as though they're "the other." The population of people living with a disability is the largest minority population in the world, and anyone can join at any time. We all have a body we need to manage, just some people need to manage theirs a little differently.
13. So do check yourself. Analyze your assumptions, your discomfort level, and ask yourself, where does it come from? What am I scared of? Why don't I know how to talk to this person? And then work on unlearning those assumptions.
14. Finally, do smile at us. Make eye contact, acknowledge our humanity. Picture yourself in the body of the person you're talking to and think, how would I want to be treated?
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Do you have anything to add from your own experiences? Share it in the comments, or email hilary@thealinker.com
Once thought to only occur during childhood, neuroscientists in the late 20th century realized that neuroplasticity continues into adulthood – the brain continues to reorganize neural pathways and create new connections well into adulthood. For people with severe injuries or illnesses, this has significant positive implications for their ability to recover, or at least to slow the progression of degenerative diseases.
The brain is responsive to experience. So let’s say you have MS or Parkinson’s, and you’re losing the use of your legs. If you go into a wheelchair right away as our medical system advises, your brain will stop sending signals to the muscles in your legs that tell them to make all the movements that enable walking. Over time, those neural pathways will stop working. Basically, use it or lose it.
But, let’s say you decide to keep walking. “What happens in our brain when we have specific movements that we’re doing, so with the Alinker it’s straightening your knee, then bending your knee to pull it back, doing that on the opposite side, and core strength. What happens is your brain is sending a neural signal that tells you, straighten your knee, bend your knee, lift your toes up. Your brain is telling you to do all of those things,” says Dr. Gretchen Hawley, an MS specialist. “With every repetition that you practice this movement, your brain tries to find a new pathway to go from here (the brain) to your ankle. If it didn’t work well, then the second attempt you try, your brain tries a different pathway.”
Neuroplasticity enables your brain to actually develop new pathways to movement, based on the feedback that you provide it by remaining active, it’s a positive feedback loop based on repetition. “Your brain has this ability to find a new pathway…your brain can find another way to strengthen the pathway and therefore strengthen your muscles,” says Dr. Hawley. “But, what it requires is repetition. The only way for your brain to find a new way is by attempting that movement over and over and over again.”
Since brain plasticity is responsive to experience, providing it with the wrong feedback can actually be damaging. “If you’re practicing the movement but it’s bad quality, you’re actually training your brain to strengthen that pathway that’s bad quality, which might result in falls, or spasticity, or something that is not desirable,” says Dr. Hawley. When looking for alternatives to wheelchairs, people with disabilities often end up using canes or walkers, but the hunched or stilted movements created by those devices may actually train your brain to develop pathways for undesirable movements.
Since the Alinker walking bike makes mobility easier by straightening the back and enabling better balance, so your legs can focus on walking, you’re able to send the correct signals back to the brain that will result in improved mobility, and strengthen the correct muscles you need for walking longer and more easily.
Staying active with a disability benefits your overall health
Beyond strengthening the specific movements you’re working on, mobility is also crucial to overall brain health. Jennifer Boney, one of our team members who uses the Alinker walking bike to manage her MS, demonstrated an astounding improvement in her vocal capacity after a few months of using her Alinker, which you can watch here. By staying active for longer, we improve our general brain fitness, which has positive implications for learning, memory, and mental health.
Neuroplasticity is what enables people to regain movement after severe injuries, to recover from strokes, and to slow the progression of degenerative diseases. By tapping into the incredible capability of our brains, we can live longer, healthier, and more joyful lives.
“Your brain wants you to move. It wants to find those pathways,” says Dr. Hawley. “You gotta stay consistent and then overtime, your confidence will increase, your strength might increase, you can participate more in life. So the benefits from all of this are just outstanding.”
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Photo by Milad Fakurian on Unsplash
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At age 31, while she was a graduate student in North Carolina, Melanie was diagnosed with Multiple Sclerosis. Following her diagnosis, she returned to her birthplace of Halifax, NS, to live with her mother, in 2006. Her condition progressed to the point where her mother could no longer suitably care for her, and in 2010 Melanie moved into long-term care. She was 39.
“A lot of the time I think we have to be pushed into change,” Melanie says. “But I love change. I know it’s inevitable, but it still hurts like crazy when you’re doing it. But I’m experienced enough now to realize, there’s a light at the end of this tunnel, so just keep at it.”
Faced with the unusual, challenging circumstance of living in a nursing home as a young person, rather than lose hope, Melanie began to advocate. Over the last 15 years, she has worked tirelessly for the disability community, with a particular focus on advocating for the unique needs of young people living in long-term care facilities. She was a co-founder of Independence Now Nova Scotia (INNS) which advocated for improvements in transit, housing, and other services that would enable greater independence for adults with disabilities.
“So many people who are in the disability, long-term care, or the accessibility community, we predominantly don’t have the time or energy to do things,” she says. “But I do. And I’ve got the skillset.”
Melanie brings a Master’s degree in Organizational Communication to the table, and over a decade of lived experience with the myriad ways people with disabilities are marginalized in society.
“Disability is an afterthought,” she says. “I liken it to being seen as an appendix at the end of the book of life, but we’re not an appendix, we’re at least one chapter, and that’s where I want to come from. That’s why I would like to change the way people look at dignity and accessibility. I would love to get to a point where we don’t need the words accessibility or inclusion anymore, where it’s just assumed…just treat us like we’re people. We’re people first, we have disabilities second.”
Melanie got an Alinker a few months ago, after many years of primarily using a wheelchair, and she’s excited about the new direction it brings. “I see the Alinker as a tool for me, rather than just a wheelchair which becomes a lifestyle, and it’s not the lifestyle that I want, it doesn’t do anything to maintain or improve your health.”
In particular, she has been writing a list of outdoor activities she can participate in now that she has the Alinker. “One of the things that people with disabilities face, and I don’t know how many people realize it, but you’re just so cut off from nature,” she says. “You can’t put your feet in the dirt, or try to move a wheelchair in the sand, it’s basically impossible. The wheelchair…it takes over your identity. Rather than, I’m Melanie and I happen to be in a wheelchair. Alinker is something that I can use, and I can do things with, that I can't do in a wheelchair.”
While Melanie may be excited about the Alinker, we are equally - if not more - excited to have her join our community as both an Alinker user, and a contributing writer for our new blog.
She will be bringing her skills and experience to the Alinker blog, to spearhead important discussions around accessibility, community, dignity and justice for people living with disabilities. But most importantly, together as a community we can build on these discussions to implement real changes in our communities, right now.
“There’s enough impetus for change right now, now’s the time to make the changes,” Melanie says. “The world is in a huge state of flux, and we just don’t have the time to sit around and debate. Let’s stop talking, let’s everybody start walking the walk.”
]]>When most people consider the access needs of people with disabilities, they think of the necessities: health services, public transit, maybe the library. But what about all of the other spaces a person might want to access in their life? What about restaurants, bars, movie theatres, places you go just to have fun?
This is the problem Maayan Ziv set out to solve when she founded AccessNow, an app that uses crowdsourced data to provide accessibility information on thousands of spaces worldwide.
“AccessNow started because I have always lived in a wheelchair and I just grew very frustrated with how inaccessible the world was to me, and how clueless I was about it,” says Ziv. “I didn’t see myself reflected in the solutions that were being built for me. They were often built by non-disabled people who imagined what I would need, and it was very health-care or service-oriented. And I like to go to clubs and parties and eat at great restaurants and travel the world. And I didn’t find any brands out there that reflected my desire to experience those things and still for them to be accessible.”
To solve her problem, Ziv launched AccessNow in Toronto in 2015. Any space that is listed on Google will show up on the app, and any user can add information about that space by giving it one of three designations: accessible, partially accessible, or inaccessible. From there, users can add comments to clarify which elements of a place make it accessible or not.
As AccessNow’s reach has broadened – they now have over 200,000 places rated in 35 countries – so too has their definition of accessibility.
“We launched with a definition of accessibility that was really focused on me and mobility. So it was very much about the world that I knew: people who use wheelchairs or people who experience mobility-related barriers,” says Ziv. “And in launching, we heard back from other communities who looked for lower table heights, or scent-free spaces, or gender-neutral washrooms, etc. And it was actually through the collaboration with the community that we have, and continue to expand our definition of what accessibility means to people.”
The app now includes search filters for a wide range of accessibility needs, such as braille, gender neutral washrooms, service-animal friendly, quiet, and more. In widening their definition of accessibility, they’ve also been able to draw connections between different people’s needs that may not be obvious if you don’t share those needs. For instance, as Ziv explains, a gender neutral washroom might seem like a need only for gender-diverse individuals, but is also helpful in the case of a couple where a woman in a wheelchair needs help from her husband to use the washroom.
“Our job, as a company, is to be descriptive and never prescriptive,” she says. “Our job is to provide people with insight, for them to make their own decisions about what they need in their lives.”
Moving forward, Ziv and her team are excited about expanding their reach into more outdoor and nature-oriented spaces. “In the last two years or so we’ve really invested a lot of time and effort around ensuring that people also have outdoor accessible trails and parks to explore,” she says. “I think there’s a lot more that can be done there, for people who are avid outdoor adventurers, or people who explore different spaces. There’s an opportunity to highlight those on the platform.”
Through AccessNow, Alinker users worldwide have an incredible opportunity to contribute their own experiences and knowledge about accessibility in their communities, and contribute to the cause of advancing accessibility and challenging stigma around people with disabilities.
“Often I find the disability community can be quite fragmented. People stick to what they know or where they know. Giving people the insight to realize they can stretch a little further and still access something accessible, is quite an exciting moment for someone who might not realize that there are certain locations that do actually offer access around the world,” says Ziv. “There’s a difference between being part of the disabled population and being part of the community. Because you can be born or acquire a disability, but you have to choose to take part in the solution of knowledge sharing.”
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Maayan was our special guest in the first of a series of 5 themed ZOOM calls. This one was recorded on the 17th Feb 2022, "Accessibility for All". LINK to VIDEO
To take part in the solution of knowledge sharing, you can download AccessNow from their website, or on Google Play or the App Store.
]]>But when a motorcycle accident in his mid-twenties left Sergio paralyzed from the chest down, he was forced to reimagine his life once again. While getting back into sports with a spinal cord injury might not seem like the most obvious choice for many, for Sergio, it was exactly what helped him move on.
“I just thought that the best thing for my life was to go back to my roots. Because I always was good, I always was okay,” he explained. “The way society works in the states, it’s just so weird, so I just felt like going back to my roots, sports are something that’s going to work for this new lifestyle.”
While doctors initially wanted him to get an electric wheelchair and resign himself to his fate, Sergio decided instead to use all of his remaining capacity to focus on regaining as much mobility as he could. “I was just like, if you guys give me a motorized wheelchair I’m not going to be an active person,” he recalled. “I just decided, this is not going to be forever.”
He was referred to a gym called Neurofit 360, a physical therapy center which specifically caters to people with neurological injuries, where he underwent intensive physical therapy that focuses on neuroplasticity-based rehabilitation. “I have been able to recover to the point that I can stand. I don’t know how to explain it,” he said. “Some days my legs are connected very well, I’m able to stand and I’m able to take some steps, but that’s all I can do. The connection is there, it’s just very vague.”
While Sergio uses his Alinker daily to practice stands and stretches, he spends most of his time in a manual wheelchair, and has refocused his energy on sports. “I’m doing wheelchair basketball, wheelchair tennis,” he said. “ I can’t do skateboarding, but I’m still on wheels.” He also has a handcycle, which he uses to participate in running events, and in February 2022, after a year of training, he participated in the Miami Marathon.
“Sports are the one thing that’s helped most, probably mentally and physically, is sticking to sports.”
]]>Years ago BE Alink started the Alinker with a dream.... "I see a world where the dismissed people of today, are our leaders into tomorrow". People who have been confronted with life, generally know a bit more about life, because they had to re-invent themselves.
People who get injured and join the people with disabilities part of our society, have to learn how to define themselves, how to behave and where to belong, because our world is not particularly kind to people with disabilities. So they know a bit more about life, about themselves... then the question is... why does this society dismiss and exclude people with disabilities, the people who actually know a bit more about life?
Is it the discomfort of the people who are temporarily able bodied? We are all vulnerable in being mortal, that is the one thing we all have in common. It is in the vulnerability where can make true connections with each other.
Our society is not set up for people with disabilities or chronic illnesses to thrive. Most public spaces and amenities are inaccessible for people with mobility challenges. Our social “support” systems force many people with disabilities into poverty, which creates a downward spiral of lack of access to nutrition, exercise, and safe outdoor spaces.
But leading a joyful and rewarding life, regardless of disability, is very much still possible. To lead good lives, we need access to mobility, community, and healthy food, and to shift the cultural paradigm around how we think about (dis)ability.
For many people who experience life-altering injuries or diagnoses, the physical and emotional trauma of loss of ability is compounded by the stigma they face.
“As a disabled person, you encounter so much negativity,” said Jennifer Boney, who has MS and Chronic Regional Pain Syndrome. Jennifer recounted an instance in which her neighbour, on his way to work, turned to her and told her it must be nice to sit on her ass all day and not have to go to work. “So many people don’t understand it, because they’ve never truly been in it.”
This lack of understanding - and resulting discomfort that many able-bodied people feel around people with disabilities - can have devastating consequences on the mental health of the individuals living with them.
“Being disabled is hard, because people look at you with pity and the one thing you don’t want is pity,” says Jennifer. “You don’t want anyone to feel sorry for you, you just want them to remember that you’re still that person that you were prior to disability, and treat you the same, but it seems like that doesn’t register.”
To shift the paradigm around disability and illness, we need to stop viewing bodies as “broken,” and therefore the lives of their occupants as broken too. The Alinker exists to challenge those assumptions by focusing on what people still can do rather than what they’ve lost, and enabling them to maintain their independence for longer.
For many people with invisible disabilities, the Alinker also acts as a visual cue to start conversations. “It’s way easier to talk about my MS and to explain things about my leg, because people come up and ask me,” says Judy Loewen. “It’s easier to tell them when they ask me about my problems, than to just volunteer the information.”
While one would think a wheelchair or a walker might provoke the same impulse to chat, our societal discomfort with disability actually creates the opposite effect: people in wheelchairs report being frequently ignored, looked over, or having people glance at them then look away. “People don’t adjust to different, they don’t know how to look at wheelchairs,” says Jennifer. “But the Alinker is cool, it’s bright and it’s cheery, and people have never seen it before so they want to ask about it.”
By initiating conversation around disability and chronic illness, we can gradually destigmatize it, not just for Alinker users but in society more broadly. “My wish is that people get used to seeing people on Alinkers and talking to them,” says Judy, “And then when they see people in wheelchairs they think, ‘Oh I can talk to them too!’”
While millions of people around the world live with disabilities, many of them don’t feel that they’re part of a community. There is a difference between being disabled, and being in the disability community. That’s why we’ve made community-building one of our core goals, to reduce the sense of isolation that so many people with disabilities or chronic illnesses experience.
“Being disabled is a hard, dark place to be,” says Jennifer. “And in there is anger, and anxiety, and animosity, and so many negative feelings. So it’s just hard…and some people cannot get out. I got out of it when I found the Alinker, and found BE, and just so many great people. And they made me not want to be so introverted and so isolated. I felt accepted, like it was cool to be disabled.”
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We tend to take mobility and our abilities to freely move around for granted until we have a stroke, get into an accident, or receive a chronic diagnosis. Maybe we need to be a bit more mindful about it, because disabilities can happen at any moment, to any of us. There is no divide between people with and without disabilities, other than that which we've created by the way we "other" people with disabilities. More than 20% of the North American population lives with disabilities, many of which affect their mobility. So it is time to make the world a safer space for people with limited mobility, and create equipment that makes people feel good, that supports them to be who they are, and allows them to be engaged human beings.
For people with mobility challenges, something as simple as walking to the mailbox can present a seemingly insurmountable obstacle. While there are an array of medical devices available to assist people with mobility issues, many of them – like walkers and electric wheelchairs – are designed to move your body from A to B, based on what the body can no longer do. The healthcare system, or as we call it, the “sickcare” system, is a reactive system that primarily medicates, or offers technical solutions for a “body with a problem.” BE didn’t design the Alinker for a body with a problem, but for who we are: active and engaged people.
The Alinker - walking bike is not just an alternative to wheelchairs, walkers, rollators, and canes, but it is a way to feel that you have agency, as it supports your health and wellness. The Alinker doesn’t focus on what you can no longer do, but gives you the ability to grow and regain skills, activate your brain, and be at eye level.
We call it a walking bike, but technically speaking, it's a walking tricycle. The Alinker is a three-wheeled mobility-assist device, with an over-arching frame, two wheels in the front and a smaller one in the rear, with a seating assembly on top, and handlebars with rear brake.
The seat is angled downwards towards the back, the nose tilted up, so the user is forced to sit with their sit-bones on the back-edge of the seat. Tilting the user’s pelvis a bit which opens up the lower back into a relaxed position. From there, with their hands on the handlebars for steering and braking, the user is able to walk independently because the walking bike removes the weight from their legs.
An adult walking bike is similar in concept to the pedal-less walking bikes used to teach toddlers how to ride a bicycle, but the three-wheeled design adds stability to prevent falls, and to ensure the comfort and safety of the user.
The Alinker was initially designed for who we are: active and engaged people. Medical devices are often a technical solution for a "body with a problem". We are not a body with a problem. So BE designed the Alinker for who we are so people can continue to be active and engaged people despite their mobility challenges.
However, as our community has grown over the years and more people are using Alinkers, we’ve come to realize that the benefits of the walking bike extend far beyond just basic movement.
On the Alinker you can move around on your own, you are able to maintain a sense of independence that can often be difficult after a significant diagnosis or injury. “Independence is probably the biggest thing,” said Judy Loewen, who uses an Alinker to help with her Multiple Sclerosis (MS). “I love being able to go by myself. There are times when I just don’t need somebody else with me, except to hang onto in order to get there. So the Alinker gives me that independence to be able to go to places by myself.”
It’s a sentiment echoed by Lynn Lizarraga, whose Inclusion Body Myositis made it difficult to walk without falling. “The Alinker has given me back my strength, my balance, my confidence, my abilities,” she said. “My husband just left to go to work. He doesn’t fear for me being able to get myself around in the house because the Alinker has made that big a difference in my life. He can go off to work, and know that he can leave me and I’ll be safe.”
“In a wheelchair you’re not eye-level, and people tend to ignore you if you’re not eye-level with them,” said Loewen. “I don’t think people ignore you on purpose, they just don’t see you.”
Many mobility devices put the user into a position where they’re no longer face-to-face with their friends and community members. Whether it’s wheelchairs, or walkers and canes that tend to produce a hunched position after significant use, the social and psychological impacts of not being able to make eye contact with other people can be isolating and exhausting.
“When you’re in a wheelchair people pat you on the head like you’re a dog,” said Jennifer Boney, who uses the Alinker for her MS and Chronic Regional Pain Syndrome. “The Alinker does get you to eye-level, you’re more a part of the group.”
Neuroplasticity, also known as brain plasticity, is the brain’s ability to modify and adapt in response to experience. Once thought to only occur during childhood, neuroscientists in the late 20th century realized that neuroplasticity continues into adulthood – the brain continues to reorganize neural pathways and create new connections well into adulthood.
This has significant benefits for our abilities to learn new things, recover from injury, and create or enhance our cognitive abilities. However, because neuroplasticity is responsive to experience, neurons that are frequently used develop stronger connections, and those that are rarely or never used eventually die. Basically, use it or lose it.
The implications of this for people with mobility issues can be significant. Once a person has lost their ability to walk unassisted, the healthcare system, or as we call it, the “sickcare” system, often immediately recommends a wheelchair as their only option. This means that many people who still have use of their legs are directed to use a wheelchair, so they’re no longer sending signals to their brain that their legs can function, and the decline of those neural pathways accelerates. The Alinker, by enabling people to move their legs, completes the feedback-loop to to and from the brain, it continues sending those signals back to the brain and maintains, or even strengthens, the neural connections that allow them to walk.
“With the Alinker, because I’m moving the muscles that are no longer supposed to move, I’m forcing them in a way to see that they can keep moving,” said Anna Connors, who uses the Alinker to manage her MS. “It’s sending the correct signal back to the brain, that I can walk. Because it’s allowing me to pick up my feet and actually move.”
Many of our community members describe the act of getting around on their Alinker as “gliding” or “flying.” The Alinker lifts the weight off the legs and offers stability, which removes a lot of the physical and psychological energy burden of trying to move around with a disability.
“I go to the Y. I work out on all the machines. And the Alinker helps me navigate through the Y,” Connors said. “Whereas before, if I’m going with the cane, I’m struggling to get to my workout, and I’m tired before my workout even begins. So it saves a lot of energy.”
Being in an upright position relieves a lot of the back pain commonly experienced by people using canes or walkers. For Alinker users with arthritis or pain in their legs, having the weight lifted off of their legs can be a game-changer.
“After a while of walking with the cane, my back hurts, I’m done. And then I get grouchy, and nobody wants to see that,” said Connors. “But the Alinker makes me happy. This makes so much of the pain go away, because I can do almost anything that I want to do in my life.”
The Alinker will work for most people with some use of their legs, who have the determination to learn a new skill. Our community members range from individuals with arthritis, cognitive disabilities, spinal cord injuries, amputations, neurodegenerative diseases, stroke, etc. Based on our experience, we say that the Alinker can work for you if you are at least able to do the following:
There is a learning curve to using the Alinker, because in many cases you’ll be using muscle groups that you may not have used in a while. You might get a bit sore in the beginning, but with commitment and determination, doing every day a bit more to gradual learn with a health-focused mindset, it can definitely work for you. The Alinker is designed for you, so you can continue to feel yourself, and maintain a healthy, active, and joyful lifestyle, regardless of your mobility challenges.