It started, as with many modern love stories, with a swipe.
In 2015, Paul van Donkelaar, a recently divorced neuroscience professor, met Karen Mason, a woman working with survivors of intimate partner violence.
They started dating and fell in love. To begin with, they were just another couple who happened to have found their happily ever after through online dating. But it soon became clear that there were bigger forces at play.
“We’re definitely unique,” says Karen, who is executive director of Kelowna Women’s Shelter in British Columbia, Canada.
“The fact that the universe decided to put Paul and I together, when I am the executive director of an organisation that provides shelter to women fleeing violence, and he’s a neuroscientist with an expertise in concussion. There’s clearly some universal plan afoot.”
Not long after they began dating she came across an article highlighting an epidemic of traumatic brain injury (TBI) among survivors of intimate partner violence (IPV).
As a professor of neuroscience at the University of British Columbia in Canada, Paul has been researching brain injury in the context of sports concussion for more than 20 years.
But while much has been done to explore the impact of head injuries on athletes, the studies on IPV are still relatively scarce. He started to question why more work wasn’t being done.
“I didn’t have a good answer,” he admits.
One in three women, and one in four men, will experience some form of IPV in their lifetime, according to the US-based National Coalition Against Domestic Violence (NCADV).
In Canada, statistics show that 207,000 women will experience a severe violent episode at the hands of a partner each year.
Of those women who seek help, either from medical professionals, A&E departments or women’s shelters, as many as 90 per cent report symptoms consistent with concussion.
“For every man who suffers a concussion playing the sport they love, 7,000 women suffer the same injury at the hands of the man they love,” Karen announced in her and Paul’s 2017 TEDxTalk ‘Ahead of the Game’.
“I realised that this was something that was probably going on with most of our clients and I insisted that we needed to do something about it,” she says now.
“We know that most physical violence within relationships is based on blows to the head and neck and there’s also the strangulation aspect.
“Most women experience physical blows to the face, head and neck, and strangulation, so brain injury is a natural implication of that.
“The stories we hear are extreme. One woman has spoken about the number of times she was thrown out of a moving car, and the occasions on which he repeatedly smashed her head against the floor.
“It is distressingly common.”
With their individual expertise, Karen and Paul were well placed to make a real difference to these women. In 2016, they launched their project Supporting Survivors of Abuse and Brain Injury through Research (SOAR) – a collaboration between the University of British Columbia and Kelowna Women’s Shelter.
In June 2019, they received a US$1m grant from the Canadian government’s department for Women and Gender Equality, to continue the research for another five years.
The study takes several approaches, both scientific and community-based, to improve the quality of life for survivors of IPV.
“We’re in a position to create some promising practices that may change the way that women’s shelters interact with their clients, the referral network and the way healthcare systems and community-based supporters accommodate and support women who have experienced IPV,” says Paul.
The fact that the government has supported the project so substantially is noteworthy in itself, and shows a recognition and understanding of the desperate need for this research.
“It’s groundbreaking. It’s very important to have direct funding supporting research around this topic, because it could have a huge impact on the quality of life of participants themselves, and in the way practices are done,” Paul adds.
“The goal of this specific funding is to create a blueprint that can be used across Canada, both within the healthcare system, and within community organisations that support women of IPV.
“That’s our ultimate goal.”
Recruiting participants from the Kelowna Women’s Shelter, Paul and his team are measuring physiological changes such as blood flow, to better understand the characteristics of brain injury in survivors.
They are also carrying out assessments for psychological comorbidities such as posttraumatic stress disorder (PTSD), anxiety and substance abuse.
He is using assessments which have proved to be successful over many years of studying concussion in athletes.
Sports related concussions and the link between contact sports and CTE are a growing concern for athletes.
The Centre for Disease Control (CDC) now estimates up to 3.8 million sports related concussions occur every year in the US and more than 100 NFL players have been diagnosed with CTE at the VA-BU-CLF Brain Bank in Boston.
While studying the effect of repetitive impacts to the head in contact and non-contact sports, Paul’s research was among the first to show that certain markers of nerve cell injury were elevated following multiple hits, and that these could be linked to a higher number of concussion-like symptoms such as headaches, dizziness and confusion.
Concussions sustained through IPV, however, are more complex to dissect.
“It’s clear that people who have experienced IPV are very likely to have a brain injury as a result of that, but it’s not like in a sports concussion situation where it happens at a sporting event, there are lots of witnesses and you can very quickly do an assessment and determine that a concussion has taken place,” says Paul.
“In the IPV population quite often it’s months to years before they seek help and so the injuries tend to be remote in time and tend to interact with some of the comorbidities.
“It’s really important to disentangle all of those factors and get a good sense of how much of the challenges they are currently facing are due to the head impacts they have received as a result of their experience.”
The information will then be used to develop tools and training resources for frontline staff and services who come directly into contact with survivors of IPV, to help them provide more effective support.
Frontline workers will also be trained in how to spot the signs and symptoms that someone is suffering from a brain injury, to help them flag up vulnerable women.
Women who may come across as “difficult”, suffer from behavioural issues, memory loss, or struggle to complete basic tasks that would allow them to move forward into a life free from abuse, are actually most likely displaying symptoms of an undiagnosed brain injury.
“For gender-based violence research, this is so critical as it is not something that we have ever taken into account before,” says Karen.
“For those of us who work in the industry, it’s going to play a huge role in creating new support systems when we’re trying to help women be healthy and better.
“If you’re coming to this without any previous knowledge that perhaps there are other factors at play such as a brain injury, your level of empathy and patience, and ability to support that woman is severely diminished.
“We should be approaching every woman we serve based on an understanding that she probably has suffered at least one, if not more, brain injuries.”
This could be as simple as making small adjustments such as interviewing a client in a calming, dimly lit, environment away from other activity, as opposed to a brightly lit, noisy room.
“A simple step like that is very specifically directed at supporting someone who has a brain injury, and is something that frontline workers and shelters could be doing right now,” says Karen.
Their long-term goal is to create a community-based support referral network, bringing various support systems together, from medical care to occupational therapy and speech pathology, so that survivors who may have sustained a brain injury have access to a wealth of support on hand.
Paul is also developing a Concussion Awareness Training Tool (CATT), a web-based utility, originally designed for use in sports concussion.
It has proved hugely successful for educating and increasing awareness of concussion and TBI in the sports industry, and it is hoped it can do the same for those working with survivors of IPV.
“The idea is to create a new module of the CATT online, specifically for those working in the IPV sector, with the goal of increasing awareness of TBI in the population and then disseminating that as widely as possible,” he says.
“We hope to have that up and running and in place by next year.”
In the meantime, SOAR is already beginning to see results on the ground, with Kelowna Women’s Shelter leading the way.
“It’s the thing that is in mind for staff whenever they do an intake with a new client, or whenever they are dealing with a particularly challenging client,” says Karen.
“Five years ago that wasn’t the case, so we’re definitely seeing change.
“I know other shelters are now thinking about brain injury and I’ve had executive directors from other shelters tell me that it has changed the way they approach their clients.”
But it’s the survivors of IPV themselves who have seen most of the impact.
The fact that someone wants to listen and acknowledge their experience has given them a sense of empowerment.
“For women experiencing IPV this is their normal,” Karen explains.
“It might be normal to wake up and be dizzy because of the physical fight they had with their partner last night, or forget things all the time and he tells her she is just stupid.
“She internalises all those messages and it might never cross her mind that she actually has a physical condition that is a direct result of how her partner treats her.
“We’ve had women go through this process and almost have a sense of empowerment at the end, because they feel like they have a label for this, that it’s not their fault, and maybe there are things that can be done to help them.”
And ultimately, that is what the project is all about.
“The reality is, women make up more than half the population, and at least a third of them, statistically, will be in this situation.
“Many, if not most of them, will see some sort of impact to the head and possibly a brain injury,” says Karen.
“Brain injury can be a hidden injury and IPV is also often an invisible problem.
“In 2019, we’re still dealing with some of that shame and stigma, it’s still an issue that many people prefer to pretend doesn’t happen.”
Paul and Karen are not those people.
They are committed to increasing research into the impact of concussion beyond what might be seen in athletes, says Paul: “We know helping them achieve a healthy life, free from abuse, is good for all of us.”
It’s a good job then, that they both swiped right.
We’ll be soaring again soon
It’ll take more than a global pandemic to stop Accessible Dreams drawing up plans for more empowering trips in the not-too-distant future, as NR Times reports.
Two of the most powerful ingredients of Accessible Dreams’ work are the very things that are restricted right now.
Travelling to exciting horizons, and being able to hang out with friends new and old once there, are at the heart of the experiences the group creates.
And at the time of writing, one is currently impossible from the UK, while the other is enabled only in a world of separation, screens and clever apps.
But Nicola Cale, who runs Accessible Dreams, sounds surprisingly chipper when NR Times calls her.
Partly, she’s been bowled over by the enthusiasm and ingenuity shown by people in the group’s vast social ecosystem in staying connected and supporting each other.
But also, it’s given her a chance to reflect on the importance of the organisation’s work – and she can’t wait to help more clients onto the adventure trail with renewed vigour soon.
Accessible Dreams welcomes people with serious injuries and often complex disabilities into life-changing overseas experiences, like skiing, surfing and safaris.
Many individuals it works with would otherwise have given up on the possibility of such adventures because of the challenges created by their condition or injury. In reversing this, magical things can happen.
Nicola, who runs the organisation alongside fellow director William Sargent, says: “Going out and being in a different environment stimulates the brain differently. Being on the mountains, for example, already changes your outlook, so if you have a brain injury or disability and your world’s become a lot smaller, to change your environment is really important.
“So too are the opportunities to socialise with others in a group which looks beyond disability.
“Making friends with other people who may be struggling with different challenges in life can be empowering and help clients to better deal with their own difficulties.”
Through its annual trips, Accessible Dreams enables people to rediscover, or even discover for the first time, the social benefits of group travel and exploring the world alongside the challenge of the physical activity.
“The main thinking behind it is to show them that life can be good again. While a person might not be able to ski or surf in the same way they used to, we want to help them discover they can still do it.
“We’re not focusing on disability, we’re looking at what we can do, what can be possible. We want to show people that their dream is accessible and make adventures which are often assumed to be beyond reach become reality.”
Coronavirus travel restrictions unfortunately led to the group’s annual safari trip being postponed, although Nicola is hoping surfing can still take place later in
And, with skiing still scheduled for February and March 2021, planning and the search for new opportunities behind the scenes is in full flow.
The three services offered by Accessible Dreams – organised trips, helping people to plan their own holiday and supplying a crew member ‘chaperone’ to join a holiday – are still proving as in-demand as ever.
Despite all future travel being clouded in uncertainty, Nicola believes the current enforced isolation has only galvanised people in their desire to see more of the world.
“I have a theory, I can’t prove it, but it’s a theory of mine, that good brain chemistry can build new neural pathways. If you’re stressed and your daily routine
is the same all the time, you’re not making new connections in your brain, whereas if you’re going out doing new things, your senses are heightened.
“So it’s important that we continue to focus on that huge difference travelling can make and look to the future to get our plans back on track for later this year and next year onwards.
“Taking people on holiday, or using our resources and connections to help is absolutely something to look forward to and be excited about.”
Over the course of the many trips organised so far, Nicole has witnessed a steady stream of success stories from people who have fulfilled personal dreams, while changing their outlook on life.
On the most recent skiing trip, which saw 66 people visiting a French ski resort, a man who suffered a brain injury several years ago, which left him with very limited powers of communication, went skiing for the first time since his injury.
That huge achievement was compounded by the fact his support worker and friend was also able to join him.
“This particular guy used to be in the Army and we knew he was an adrenaline junkie before his brain injury.
“So we arranged for him to ski down the mountain in a sit ski. We found out that his support worker used to be in the military with him, so we arranged for him to go in a sit ski too.
“That was a special moment. It’s a cliché but you could see him light up, he was visibly brighter in his eyes, and also more upbeat afterwards.
“We also have a blind man who has now been on four ski trips with us and has learned to ski standing up. It’s incredible that he’s learned this new skill.
“That feeling of exhilaration, the speed and perception of danger – even though in reality it’s the safest it could be – has a really special impact on people.”
While the trips are primarily for the benefit of the person with the serious injury or disability, they can be equally important for family members and support workers too, says Nicola.
“You can see sometimes they’re a bit nervous about going on trips, so that’s why we offer the range of services we do, either arranging the holiday, helping to arrange someone’s own holiday, or having someone to send with you.
“Seeing a loved one being able to ski or surf and seeing the difference that makes to them, can be very emotional.
“I had one lady recently tell me that going on one of our trips with her son helped her to let go a little bit as a mother and to realise that people really did care – and that it was OK for her to take a step back. I thought that was brilliant.
“Her son also said about travelling as a group, ‘We went as strangers and came back as friends’ and that’s exactly what we want to achieve.
“We see it as building a community of people who have mutual experiences and common loves, and we have set up a WhatsApp group for people who are travelling so they can keep in touch afterwards. That’s been a really nice more recent addition to what we do.”
Each trip organised by Accessible Dreams is meticulously planned according to the bespoke needs of the participants.
“We want to take people to places that are unusual and appealing, but on a practical level, we make sure that whichever adventure we go on, there is a great hospital or medical centre nearby, and of course make sure the resort we go to meets our needs exactly.
“The ski resort in France we visit now knows us. They’ve got great resources, but we’ve also made sure their ski instructors are clued up on brain injury and have taught them about brain injury awareness.
“Also, we add in other aspects which are tailored for the group, such as having a rest day after a travel day.
“These are the sorts of things that package holidays don’t really factor in. So we might make a holiday for ten days instead of seven to allow some extra time getting over fatigue.”
Plans are also underway for trips, including those within the UK, that provide a more relaxing alternative to adrenaline-packed holidays.
Nicola is also hoping to arrange high-octane day trips as soon as the COVID-19 restrictions are lifted.
“If someone wanted to do a skydive, for example, we could look at that.
“There are also opportunities for cycling or walking holidays closer to home and we’ve got links to some adapted properties in the UK which could help with that.
“Also, we ran a fantastic ‘sensation’ vacation to France, with some alternative therapists joining us.
“We had good food, aromatic essential oils and all kinds of other things that indulged the senses of taste, touch and smell. That’s something we could look at doing in the UK once we’re allowed to move around again.”
Accessible Dreams has long been in the business of overcoming seemingly unscalable barriers. It looks like the current crisis will be just another challenge it rises to and ultimately leaves for dust on the road to another adventure.
The MS secret that sparked a movement
“It’s not the cards you’re dealt that matters, it’s how you play them that counts.”
For Jessie Ace, this is a mantra that inspires her every day.
It has helped her overcome her career dreams and confidence being shattered by her multiple sclerosis (MS) diagnosis, and underpins the positivity that now enables her to inspire so many others with chronic illness around the world.
Through her DISabled to ENabled podcast, Jessie has built a global following of people who turn to her for inspiration, after turning around her life and outlook since being told she had MS at 22.
When the news was delivered, she had just graduated from university, was embarking on a career as an illustrator and had even clinched a book deal.
“I suddenly felt I had lost my purpose,” she says. “I had a degree that meant nothing, the business I’d spent two years painstakingly building up was gone, and I couldn’t be an illustrator which was my dream and what I had loved doing since I was a little girl.
“At first I woke up one morning paralysed down my left side, completely out of the blue, but then later I lost use of my right hand too.
“It was the worst time of my life. As a student, I had these ideas that great things were going to happen, but then it was all over.”
Then came the bewildering search for answers.
“The worst part was not knowing where to turn, or who to turn to. The lack of information about MS in general was really bad, but there was nothing for young people, nothing for a young person to relate to who had just been given this devastating news.
“I knew nothing about MS and the doctor who gave me my diagnosis just told me to Google it.
“There wasn’t even a leaflet, or any advice, recommendations on who to speak to, nothing.
“As you can imagine, I found every negative story there was through my searches online and it was very scary.”
Finding other young people experiencing what she was going through also seemed impossible.
“There are local MS support groups out there, but that did not feel like the place for a 22-year-old to be.
“Everyone else there was much further along in their MS journey, people were in their 50s and some were in wheelchairs, and the outlook immediately became really scary.
“The idea of what I thought my future would be really freaked me out and I became really depressed about it.”
Determined to get on with her life, Jessie took a job as a glass collector in a local club, then went back to university as a student ambassador, before finding a job as a graphic designer in fashion. But all the while, she kept her MS totally to herself.
“I didn’t tell anyone. You would look at me and think there’s nothing wrong with me as I don’t look ill. That is the thing with hidden illnesses like mine.
“I didn’t want to be pitied, or for people to make judgements, or to say ‘don’t lift that chair’. I just wanted to be me.
“I realised that the five people closest to you can shape your outlook and those around me gave me the support I needed.
“When you have a bad day, to have people close to you telling you that you can do this, you can get through it, tomorrow will be better, is so important.
“I also came across a book called ‘The Miracle Morning’, which helped me to build a positive mindset. My whole perspective on life began to shift.”
Spurred on by her wish to help support young people in her position, and with her new-found positive approach, Jessie began to share her experiences online.
“The way I got started building my confidence was by sharing my story on Facebook Live videos about four years after my diagnosis, while working on a wedding business. I’d never told anyone really about my diagnosis, so that was a scary thing for me.
“I mentioned on a video one day that I had MS and the response astounded me.
“Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress.
“Before I knew it, people began reaching out to tell me about their illnesses.
“They said they had not shared their stories with anyone before, because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illnesses.
“That was when I realised that my story was bigger than me and that my experiences could help people.” From there, Jessie’s podcast was born, alongside a Facebook group inspirationally-titled ENabled Warriors, which helps newly diagnosed people and provides a forum for those who don’t feel like they fit in with traditional groups.
Through its uplifting approach, thought-provoking content and often celebrity guests, the DISabled to ENabled podcast has become a hugely popular outlet for people young and old, with a loyal and growing following across the world.
“It absolutely makes my day to hear from someone that the podcast has helped them. I have been where many of them are, where they feel it is the end of everything, but sometimes it is just knowing that someone understands, and is there, that can make all the difference.
“Most podcasts like this are American, and I know a lot of people like that we are in the UK.
“Changing the support available for young people with MS is something I feel very strongly about, and we do have a lot of young people who interact with
us, but also a lot of older people too.
“I think for older people they perhaps haven’t had the chance to access something like this, so I know it has been welcomed.
“I want to help people have the confidence and the voice to share their experiences and their stories in the right way, as I know from my own experience how much this can help.”
Jessie, 29, is also teaching people how to make their own podcasts and plans to create a course which helps people to express themselves through writing, social media and the global online community.
She is also about to launch a book for people to use as a diary and planner, to keep a record of relevant information for themselves and medical professionals.
“I’ve created this for people to keep track of how they feel, their medication, hydration and the exercise they’ve done and there are daily sheets to complete.
“This can be really valuable to take to hospital appointments or your healthcare practitioner, instead of having to remember what you did on this specific date, you can have a record of it. It will hopefully lead to more productive appointments and outcomes,” she says.
“I have also taken inspiration from the book that helped me so much, The Miracle Morning. You can visualise how you want your day to go and the person you want to be.
“There are a series of ‘I am’ statements which can help shape your whole outlook for the day – to keep in mind that ‘I am confident’ or ‘I am full of energy’ can help you adapt mentality and give you a renewed focus, instead of thinking you are tired or today isn’t quite what you’d hoped.”
Having established herself as a prominent MS campaigner, Jessie has also become a writer and illustrator – reviving the dream she thought was lost – for many of the world’s biggest MS charities including the National MS Society, MS Society UK, Shift.MS and MS-UK.
She has also illustrated for Momentum magazine, MS Matters and New Pathways. From the dark days of her diagnosis, for Jessie, the future is full of positivity.
“When I was first diagnosed, I didn’t cope. I believed my life was gone. But now, it does feel great to be able to share my experiences with people who are just as scared as I was, and show them there is a way through, you can do this.
“Anyone who knows me will tell you I love quotes, and one that really resonates is ‘It’s not the cards you’re dealt that matters, it’s how you play them that counts.’ I think that’s really important.
“Having MS is not the end of anything, although it may seem it, and you are still capable of doing absolutely anything in life. Sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer.
“Never let anything stop you from what you want to do.”
Listen to Jessie’s podcasts at https://mmini.me/dtepodcast. Her book and planner will also be available via the website https://mmini.me/blog following its launch in April.
Working your way back after injury
Returning to work after a brain injury can be a long and daunting road. Here brain injury survivor Dean Harding discusses his own experiences with Irwin Mitchell employment lawyer Emilie Cole and occupational therapist Mandy Richmond.
After being assaulted in 1998, Dean Harding’s life was turned upside down. Years of rehabilitation followed to help him cope with his traumatic brain injury. But the world of work seemed a place he would never return to, believing that he “wasn’t capable”.
However, the birth of his son 17 years later changed his whole outlook on life.
“I didn’t want him growing up thinking, ‘why isn’t my dad working?’,” remembers Dean.
“Most people work, or they’re supposed to. It gives me a sense of feeling like a ‘normal’ person, although I’ve still got my disabilities.”
Dean was given a job as a peer support worker with Headway London; helping other people whose lives had been affected by brain injury.
The fact he was now in employment also enabled the purchase of his first house. For Dean, providing for his family in this way, and overcoming his own personal battles, were huge achievements.
“Because of the disabilities, it’s portrayed that you’re useless, you can’t do anything. I don’t know if he was trying to kickstart me into doing something, but my neurologist said I would never have a meaningful job. To me I’ve now got a meaningful life, so I sort of blew him out of the water,” he says.
Emilie Cole, (pictured above, to the left) an employment specialist with Irwin Mitchell, says the ability of someone with a brain injury to secure a job which also takes into account their needs and requirements, is a huge boost.
“The psychological element is probably more important than anything else, that sense of being purposeful, productive and contributing towards society,” she says.
Dean agrees. “I feel more normal. I feel like a member of society. So I can join in conversations where people are talking about work. I just used to sit there and I couldn’t get involved in the conversation because I didn’t work. And now I can get involved.”
Through her role as an occupational therapist, Mandy Richmond works with many people with disabilities to encourage them to return to some form of vocation.
“I think the best is if there’s a fit between the individual with a disability and the work itself.
“So to me, if there’s a right fit, the psychological benefits would be amazing. If there’s the wrong fit however, if the hours are too long, if their start time is too early, that person with a disability can actually feel under pressure.”
Emilie believes being honest with a potential employer from the first dealings with them is an important place to start.
“I always advise clients to be open and honest and disclose their disability from the outset, then you can talk about what reasonable adjustments you need to support you in the interview and application processes, because legally under the Equality Act you’re covered as an applicant.
“So not just once you’ve got the job, but also if there were things that need to happen in the interview and with the way the application form is set up to make it easier for you to have a successful potential application, then you should communicate that. And luckily most employers seem to be quite good at that initial stage, in my experience.”
Once a person with a disability has secured employment, their employer, through the Equality Act, has a duty to make reasonable adjustments to support them in the workplace, to remove any substantial disadvantage they face.
Emilie says: “Often it’s essentially an objective decision. What tends to happen is that occupational health will be involved, medical professionals will be involved, but it will unfortunately come down to the employer to look at what those adjustments are and whether they can reasonably action them in terms of the workplace.
“For example, things like a staged return, later start time, earlier finish, breaks, all of that. That should be reasonable in any workplace, quite frankly. The difficulty is sometimes the mismatch between an employer understanding or taking on their responsibilities under the Equality Act and actually doing them to the benefit of that individual.
“Legally once an employer is on notice of your disability, then they have to make reasonable adjustments. But in real life, employers actually expect you to tell them what you need. So if you put it in writing and make it very clear to them what changes need to be made, they’re going to then look really bad if, in six months’ time, they haven’t made those changes.
“And unfortunately that’s where I will frequently come in and try and persuade them as best I can, and often we are able to do that. Sadly in some circumstances we can’t, and that’s where we end up going to the Employment Tribunal.”
Dean can understand such a situation from his own personal experience.
“From a brain injury perspective, you don’t want to be told you can’t do something. There are many people who have just come out of hospital. They don’t realise the impact of what their brain injury is going to have on them but they want to go back to work full time,” he says.
“They just want to go back to the life they had before, because they can’t come to terms with their new life, that changed forever in 30 seconds, and they’re not willing to accept.
“They can end up in a vicious cycle where the mental health deteriorates, then it has an impact on their family life, and the family life then becomes fragile and broken.”
Mandy agrees. “The individual has to be aware of their own limitations before they can put themselves into that workplace environment. But you get lots of people with post injury who are desperate to get back to work.
“Very often [brain injured] people I work with have their accident and immediately want to return to work and will actually do that, [but then] cannot cope.”
Emilie says: “We do have this culture now where a lot of jobs are very stressful, very demanding, and if you can’t cut it, it’s ‘if you can’t take the heat, get out of the kitchen’. I think a lot needs to be done to educate people that actually with someone with a disability, you need to work with and support them in doing that job and not just sort of discard them.”
Mandy adds: “Over the course of my career, of about 25 years, there has been a very positive shift in the UK, towards having a greater understanding of people with disability. I wonder if that also came through from the Paralympic sports and the growth within that industry and people’s attention drawn to that. Although things are not perfect, it’s certainly moving in the right direction.”
For Dean, his life was completely transformed through securing employment, and particularly in such a rewarding role.
“The role I’ve got as a peer support worker as part of the casework team, was made for me. I love it. I go into hospitals and support the families and the person, when they’re tearful I can give them hope. They think, ‘oh, so there is light at the end of the tunnel’. It took me years to get where I got, 17 years to get a job. So never say never.”
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