Their artist pseudo name is Retrophiliac which means lover of past things. “I am very inspired by the 60s, 70s, 80s and 90s and it is reflected in all of my work and even my personal style. I came to make a change for many people are not just myself. I find strength in my work and the overlap of my activism, advocacy and art.” ~ Margaux Wosk

During the insightful hour-long video Conversation, their frustration with the government funding process connected to home health care and the need for more free mental health support were passionately discussed. It quickly became evident that their support group provides significant help to many other women in similar situations

and through their on-going interaction, they are able to share coping mechanisms.
One of the more frequently asked questions is whether sex with their partner is still possible and the answer is “yes.” It may take a different form for different people, but it can be done, they shared. Sometimes it looks a little different from traditional sex… “but there are so many options.”

Even with government support, the women say caregiver services are far from satisfactory and Brooke had endured “terrible experiences.” Some caregivers would show up late and one missed 82 shifts! Brooke shared. “….she said she was coming to the house but I was doing all the work and she was getting paid for those 82 shifts.” Elena adds, “Not everyone who is in the field should be in the field.” And the reasons for the poor service? Brooke feels that it is because “caregivers are overworked and underpaid” and have too many clients to handle to provide proper care. Elena echoes a similar sentiment stating that caregivers often didn’t show up so she had to fill in for them.

Both Elena and Brooke said they had to learn how to “share their space” with daily caregivers, but Elena admits that the “hour and a half in the morning” when they are in the house assisting her partner, this allows her the chance to do dishes, take the dog out for a walk, and get other things done. Elena says it has “taken them a while to find the right caregivers.”
At one point during the Conversation, Sophia asks the two women about their feelings as it relates to the role they now play as opposed to the one they played before their partners injury. “We love our partners” was the immediate reply. Elena says in the beginning she was beset with thoughts of “Why me?”, but has now adjusted to the new normal. “I kind of forget that Dan’s in a wheelchair” she says. Brooke adds that although some wives and girlfriends may find it difficult to accept the new reality of their partners with spinal cord injuries, she never considered any other option but to be with her partner and care for him. “I love this person,” she says, “I believe this was put in our lives for a reason.”

Another area where people with dementia need to be amplified is through the media. We are consuming more social media content like never before. It is important that older people are celebrated and are shown in their truest form. An older man on a wheelchair is not the only indication of an older person, we are living in an aging population but a very lively one. We have a lot of people who are living well with dementia. Stories of hope are important to tell because it provides real hope for families who have someone with dementia.

It continues the conversation of seeking therapy and working towards a dementia diagnosis and hopefully a cure one day.

But something I’ve had to learn as I’ve got older. Is there is no real point where it suddenly all becomes ok. And accepting this is a hard pill to swallow.

From a secondary school teen, my mental health has been my demon-fed and fueled by a struggle to find acceptance of the path I was put on. Bullying was also a feeder of that demon – The opinions pressed on me by the wider world- often reformed themselves into my own self-doubts.

Age 15, whilst walking home one evening, I had abuse hurled at me, with cans and footballs thrown in my direction. I’ve had my face photoshopped on memes. I’ve been followed and filmed in the streets. Had my social media leaked onto “just for fun pages”. I’ve been called every name under the sun . . . Fat. Ugly. Freak. Monster. Been told that I should’ve been given up as a child. Some even going as far as telling me my existence on this planet isn’t worthy. And for what? Because I happen to be 1 metre shorter than the average adult, my life doesn’t hold as much value as if I happened to be 100cm taller?

I’m not going to bore you with the jargon and statistics behind my physique, but the simplest way to explain how my condition became a thing, can be done in two words. Genetic fluke.

Neither of my parents have the condition, nor have traces of the gene in their families. Therefore, it was a fluke. A chance. A coincidence. An accident if you will…… whatever you wish to describe it as, no one held any responsibility for it. No one has any control over it. I certainly didn’t choose it.

Yet I’ve had to learn to be ok with its consequences.

So, you know what – I’m entitled to feel a bit pants someday.

But then other days. Most days…it is ok.

Like today. Writing this. I’m ok.

But that doesn’t mean today is any more of an achievement to last week when I screamed for my doctor to make it stop.

The truth is we don’t always have to be ok with the things that cause us hurt. We don’t have to be ok with feeling pained. We don’t have to put on a brave face every day and always be used to it – Someday its more than ok to hold our hands up and say you know what- this sucks! But something else I’ve learned over time, is in the moments of denial . . . the times where we least accept what is in front of us . . . all we really do is add to the fire that we are trying to put out.

What I mean is. On the days, I hear the shouts on the street. Or the days social media tells me I’m unworthy; where am I getting if I allow myself to repeat those same words and feelings to myself?

Well, I can tell you from experience – it’s nowhere nice.

We spend every waking minute with ourselves – and in time I’ve began to realise that for that reason- my own outlook on myself is probably more important than the satisfaction of an online troll, who probably couldn’t even tell you my name.

It would be easy to be bitter. As bitter as the world that surrounds us… And believe me, those feelings don’t go unseen. I’ve cried for days. Prayed for days. I’ve begged doctors to “take it away”, but all the time knowing nothing is going too. This is my card. And it’s mine to accept.

But you know what else I’ve learned?

Accepting your disability isn’t just a switch you can flick. There are days where you feel so confident and nothing can stop you, and days when someone who probably isn’t even looking at you can send you on a downward spiral.

 

 

 

 

I named this column “My journey of self-acceptance . . . in progress“

Why?

Because I’m still on it. I’m still learning everyday – and I’m equally making mistakes and digging myself out of those downward spirals everyday too, but in making those, mistakes I’m finding in myself the strength to accept the things that part of me might still not be ok with.

Somedays I write columns.

Some days I present seminars.

Other days I don’t want to look in the mirror, but each of those days are part of the journey.

I don’t think I’ll ever be ok with being called names on the street – but to be ok with the body I am in, so that I learn to not believe them.

That’s where I want my journey to lead me.

That’s the path I am on.

A journey of self-acceptance . . . that continues to be a work in progress.

Marcela’s adventurous personality does not permit her to limit herself, so she frequently steps outside of her comfort zone and embarks on many journeys around the world. Travelling solo, she confidently visits countries with which she is unfamiliar, sometimes not even being able to speak the same language and oftentimes not being sure beforehand how accessible it will be. But as she checks a completed excursion off her list, it is done with a sense of satisfaction that another accomplishment has been achieved.

Although she has travelled to over 15 countries and experienced some amazing things, her most memorable is climbing Mount Kilimanjaro. “It was challenging mentally, physically and emotionally but it was a phenomenal experience because I never thought that as a person in a wheelchair, I would have been able to do this and I am very grateful for having had the opportunity to do it.” The team at Paratrek and their ingenious Trekker was her climbing aid and the euphoric feeling of getting to the top remains with her even today.

Exuding confidence as Marcela does is often not an easy feat. “Everyone has insecurities and so do I, but I do not allow it to show,” she shared. “People see confidence in your eyes,” she continued, “so I make sure that I maintain that confident feeling as much as I can.” She does admit that sometimes it is hard, and not being able to wear an item of clothing or a pair of shoes the way she would like to is bothersome, but that feeling is often just a fleeting one, quickly replaced by positive thoughts.

“I do not like to have people pitying me because of my disability.” Marcela continued, “I do not like to be treated as a person with a disability. Treat me like you would treat everyone else – like a person!” She worked in the health care industry for 10 years. Her employers knew her needs and met them. She was treated like a regular employee which she appreciated, and at no time was she made to feel any different from the able-bodied members of staff. This can happen in every workplace for other people with disabilities and she urges employers to seriously consider inclusive employment because people with disabilities are people first.

As the charismatic Marcela continues to give followers a peek into her world, companies are recognizing her impact and are capitalizing on her expansive reach to help spread their message. She is a global ambassador for several brands whose products are aimed at helping wheelchair users live full lives. One of these products is the Exoskeleton which she, as an ambassador, has been using as home therapy twice a week since 2014. She has the first unit created and wears it to stand and walk. Marcela enjoys the flexibility of having another mobility option, and her Instagram followers get an insight into a technology which they too can experience as a result of her making them aware of its positive impact on her life.

If you are a person with a disability and specifically a wheelchair user, Marcela says to you:

“Do not be afraid. It is important to live like if you do not have a disability. Do not limit yourself.”

It was a moment of reckoning for Barbara, who had always been fueled by a passion for justice and inclusion. She believed strongly in the right to live and express life on one’s own terms, free from the constraints of society’s expectations. She was keenly aware, however, that some people, especially those needing mobility assistance, continued to be systemically “othered” by society and cut off from enjoying even life’s simple pleasures.

“…for those who want to live despite mobility challenges.” Barbara set about designing a solution, knowing it would have to be something her mother would want to use. Enter the Alinker, a revolutionary non-motorized bike without pedals that enables the user to work leg muscles and be mobile while being seated. The device is built for 3 inseam ranges and is useful across a spectrum of activities: a young child with cerebral palsy stabilizes himself during a virtual exercise program, a lady with multiple sclerosis (MS) makes the short trip to the corner shop, and a Paralympian flies around a track in preparation for a marathon. The limits of the Alinker really are the limits of the user.

“A vehicle for change.” Beyond the obvious physical advantages of the Alinker, it addresses other deeper issues. On the surface, its value stems from the movement it allows users, because movement equals independence, which equals value, right? Of course. Less visible, however, is the social divide between those who need mobility devices and those who don’t: if you see me in a wheelchair and have to approach me, you probably feel a twinge (or more) of discomfort. In your mind, my immobility promptly groups me in a category of person unlike and therefore inaccessible to you. This mental sorting process is automatic, natural, and convenient. Human nature pushes you to protect your comfort zone, so in order to deal with the awkwardness, you will either subtly ignore me or display patronizing behaviour towards me. The Alinker addresses this by placing the user at eye-level with others (you’re perched on a seat as opposed to seated in a chair), which subtly but very powerfully makes the user more “accessible” to non-mobility device users. Additionally, the innovative design of the Alinker so captivates people seeing it for the first time that their curiosity overrides any discomfort about the person’s disability. The device then becomes a conversation starter and therefore a “bridge in the gap” between the MD user and non-MD user.

“A body is what we have, not who we are.” Alinker users the world over continues to bring this phrase to life in the way they “bridge gaps” and move through daily life. They fully embrace the idea that their immobility doesn’t define who they are; rather, it simply has to be worked into active engagement in all areas of life.

Prominent users include Colonel Carlo Calcagni, an Italian military officer-turned-Paralympian who recently completed the London marathon on his Alinker in just over 2 hours; Roxy Murray, a London-based fashion influencer, podcaster, and activist with MS who colour-codes her Alinker and other walking aids with outfits for her Instagram posts; and Selma Blair, an American actress recently diagnosed with MS for whom the Alinker has become “her way out again”.

“Together we move differently!” Making “her way out again” means Selma and other Alinker users regain access to the outside world and to a special community in which they thrive and inspire. The Alinker community promotes activity, awareness, and support among users as well as non-users through Facebook and Instagram groups, online networking/ information sessions, and exercise programs through the Alinker Academy. To address financial hurdles in purchasing a device, the company offers rent-to-own opportunities and crowdfunding programs through the Alinker site. The Race to Raise features Alinker record-setters running marathons, races and other events to support campaigns for others to get their devices; so far, 191 of the targeted 200 campaigns have been completed! This translates to “191 times more agency, belonging, [and] mobility”.

From the first Alinker deliveries to ecstatic customers, people previously marginalized by society have been re-imagining and re-purposing their lives.

Yet, for all its reach and impact, the Alinker represents only a single part of a greater company vision to provide access to community, mobility, and healthy food (the company recently opened an accessible farm in Kentucky, USA, where it employs Alinker users). When Barbara founded Alinker Inventions, Ltd. in 2012, she realized very quickly that it is first and foremost the access to these key resources that promotes a healthy, fulfilling life. Through innovation fuelled by a passion for justice and equality, the Alinker continues to offer access to such a life that is the birthright of all, regardless of mobility or other challenges.