Harsh reality of living with a disability in lockdown
Coronavirus has affected the lives of everyone in Wales, whether through contact with the virus or the reality of living through lockdown. But the experience for people with disabilities in these difficult times can present its own array of complex challenges, as Lucy John reports
JOSHUA REEVES, 23, is a disability rights campaigner living in Cardiff who says his whole life has been affected by the lockdown.
Joshua has cerebral palsy and started his campaign, Don’t Call Me Special, in late 2013 to share his message that disability doesn’t define him.
As part of the campaign, he often visits primary schools in Wales, but has also taken it further afield. Until the lockdown started.
“I am finding things very difficult because of lockdown,” he said.
“I am active and go to a lot of different conferences and events as part of my campaigning. With that being my main role, it has been completely affected.
“I am getting bored and frustrated and especially with this lockdown going on and the impact it is having on my mental health.”
He added: “When it comes to getting out and my day-to-day life without lockdown, I am very independent. I go out whenever I want. I meet up with friends and go to the pub a lot.
“I live in a residential home with five other disabled people and I have a support worker coming in and out to help me.
“I love rock music and often go to Fuel Rock Club in Cardiff. They are doing live streams, so you can have a drink at home and watch them.
“I also use Zoom to have a video call with my family once a week; we play different games each week to mix it up, which is fun.”
Through charity Leonard Cheshire, Joshua has blogged about his self-isolation and has interviewed some of his role models, such as Judy Heumann from Netflix documentary Crip Camp.
He said not only has this helped him to express what he’s going through, he is able to help others too.
But the pandemic has made him worry about catching the virus and spreading it to others he lives with. Because of this, he is being extra cautious.
He said: “I’m making sure I don’t go out in the community, I don’t want to risk catching the virus. I don’t class myself as vulnerable because I haven’t received a letter and my immune system isn’t weak.
“However, I don’t want to catch it and then pass it on to those I live with, who may have more complex needs. I’m more worried about other people than myself.
“I usually do my own shopping too – I tend to go every day to pick up a few items. But with lockdown, I’m having to rely on ordering food online once a week, but it has been a struggle finding available slots. But luckily my parents can drop off food if I needed them to.”
However, the pandemic hasn’t just caused him to worry about catching the virus.
“I’m also worried if my wheelchair breaks down, I have no idea if anyone will be able to come to my house to fix it,” he said.
■ Nic Kinnaird, 45, lives in Cardiff. In 2013, she had a stroke, which weakened the right side of her body.
She has recently completed a BA in educational psychology and special educational needs, and is working towards a PGCE.
She wants to promote the message: “Just because I am disabled, it doesn’t mean I can’t progress in life. I just have to have a positive outlook.”
She has a carer who comes in her house three times a day, which has continued during lockdown, and lives with her husband David, 49, and their two sons, Logan, 14, and Duncan, 17.
Nic said she is classed as being in the vulnerable group during the pandemic due to underlying health conditions so is doing her best to keep herself and her family well.
“My older son is doing a building apprenticeship and helped to build the Dragon’s Heart Hospital,” she said.
“When he comes in he takes off the clothes he wore outside and goes straight upstairs to shower to stop contamination – I stay out of his way to avoid getting sick.”
Nic uses a wheelchair part of the time and also a walker because she can’t walk long distances.
She said it is important for her to keep her strength up during the lockdown and goes for walks with her husband every day.
She said her neighbours have helped to keep her spirits up and given her a sense of normality during lockdown.
“We’re quite friendly with our neighbours on both sides of our home, and we sit in our individual gardens at the same time – social distancing of course.
“We’re just trying to be as normal as possible.”
She added: “The main thing that’s changed for me is that I’m used to having my own space, and now my husband is at home and my youngest son is doing school work from home – I’m used to it being quiet and getting on with university work.”
She hopes lockdown will have a positive long-term effect on the lives of some disabled people who find it difficult to work in an office.
“Because everyone’s been told to work at home, if they haven’t been furloughed, it’s changed so much,” she said.
“Before if a disabled person went for a job, they would be expected to work in the office or workplace, not from home, which can be difficult. I think this has proved people can adapt to work at home.”
■ Kevin Chunisingh, 44 lives in Burry Port, near Llanelli, with his wife, Becky.
In September 2009 he had a kitesurfing accident, in which he fractured his neck and was paralysed from the chest down.
Now a full-time wheelchair user, Kevin said lockdown means he is unable to do some things he enjoys, but his positive attitude is getting him through.
“One of my coping mechanisms for being disabled is spending a lot of time outdoors, visiting places like Pembrokeshire, Dorset and Cornwall, so not being able to do that has been hard,” he said. “But luckily, with the good weather I have been spending more time in my garden. I’ve been able to appreciate my own space more and feel that I am very lucky to have the space to do that.
“I do get restless, but I think to myself that these restrictions aren’t permanent and I will be able to visit them again.”
He added: “I’m lucky because I have Becky. She takes great care of me and does the shopping so I don’t have to worry about that.
“It would be so much harder if I didn’t have the help.”
Though he is finding aspects of the lockdown tough, Kevin believed it can also be an opportunity for people to appreciate their loved ones, also what they have.
“There are a lot of people getting frustrated by the lockdown, but for many people in a similar situation to me, we are in a permanent lockdown.
“I know someone in a similar situation who has been in bed for about a year and a half.
“After my accident I spent a total of 15 months in hospital.
“Lockdown can be an opportunity for people to slow down, spend time with family if they live with them, to appreciate what they have in their own space and going out for walks.
“We can focus on what we have and what we can do.”
Some years after his accident, Kevin picked up a new and unlikely hobby: painting. He found a way of securing a paintbrush to his hand using his feeding strap, which assisted him to paint.
Since lockdown, he has been trying new types of art, which he said makes him feel happy because he is achieving something.
“The type of painting I usually do takes a lot of effort and I have injured my shoulder, so I’m doing less of that at the moment. But what I am trying new styles like drawing and illustration. I did a sketch of an eye which came out really well.
“I usually avoid sketching because I don’t have much control over my hands. I’m taking it as an opportunity to pick up new skills and apply them to my painting when I start back again.
“Also when you are learning new skills and you become totally immersed in what you are doing your mind does not wander – it is mindfulness, essentially.”
■ Hayley Morgan is 33 and lives in Port Talbot with her husband, Richard, 39, and their two children: George, 6, and Henry, 3.
Hayley was diagnosed with autism at the age of 30 and is a full-time carer to her husband, who also has autism.
She has also recently finished an MSc in autism and related conditions.
She said the lockdown is challenging for a lot of family carers at this time, but that it’s important to remember some carers are disabled themselves.
“What’s really getting me through this is taking a day-today approach. I can’t control when we can go to Costa or when the schools are open, but I can control the day to day. For example, routine is really important for autistic people so we’ve adapted to a new routine,” she said.
“Before the lockdown started our normal routine was to drop the children off and then go to Costa for a coffee at about 12.30pm. Now, we have that coffee at the same time at home.
“Our kids do taekwondo classes through Zoom too, which helps. I’m also letting us as a family indulge in our special interests which autistic people often have.
“As a family we love birds and we watch them in the garden. It’s important for our well-being and keeps us happy through the lockdown.”
Hayley said she feels relieved that her children, who have some autistic behaviours, have taken it so well.
She said: “It’s been hard explaining the news to the children at times, as autistic people don’t like ‘grey areas’ and rather things being black and white.
“However, my six-year-old has been very level-headed.
“On the days where I feel like I’m not coping, he really helps. If the children weren’t coping so well it would be a lot harder.”
She said having autism has meant some aspects of lockdown have been particularly challenging, explaining: “I take rules very literally. I was told in my driving lessons always to indicate on a roundabout and I always do. I think it makes me a good driver, but in lockdown, when I see people flouting the rules it gets me really angry.
“I think, ‘If I have to do this, why aren’t you?’,”
Hayley has hyper-mobile joints, a condition often related to autism. She said it causes her pain, but is improved by exercise.
Since she can’t go to the gym because of lockdown, she said she has noticed the pain getting worse.
She said: “Not being able to do physical exercise as much is a struggle. I lost 7st to help with my joints, as I was told I could end up in a wheelchair if it gets worse. Exercise helps with the pain and to build strength and since lockdown I’ve been experiencing more pain.
“However, I am lucky enough to live near Aberavon Beach, so I go there for a walk every day at 4pm – that also helps with my mental health.”
■ Emily Roberts is 22 and lives in Swansea with her parents.
She has cerebral palsy and works as an admin assistant at a bridal company.
Miss Roberts said she feels positive and grateful for everything she has.
“I’m quite fortunate because I live with my parents, they do a lot for me but I am also very independent. I have a full-time job and I can drive, but I am furloughed at the moment.
“I’m one of the lucky ones that this lockdown hasn’t stopped me living my life. It has made me feel very grateful. I try to focus on what I do have.
“Even though it is lockdown, I am quite positive. I have been brought up with a positive attitude. Having a disability, we are used to adapting and often have to adapt because of our situation.”
Miss Roberts said her home has been adapted and she has equipment so she doesn’t need to go outside for exercise.
She said: “Our home is adapted for me and we have the equipment I need to do exercise at home, so I don’t need to go out for exercise. We also have a wet room downstairs and a stair lift.
“I do feel for people who may be living in more complex situations.”
One thing Miss Roberts is doing to keep her spirits up while she is unable to go to work is setting herself small goals each day.
“I have the mentality where I always focus on what I can do,” she said.
“I’m spending more time doing things I wouldn’t normally have as much time to do. I’m focusing on getting fitter, keeping my room tidy and speaking to friends as much as possible – that’s really important.”
Miss Roberts makes YouTube videos to document her life and said the lockdown has given her the opportunity to put more time into that, which she really enjoys.
■ Trevor Palmer was diagnosed with multiple sclerosis in 1994 and has been a full-time wheelchair user for the last four years.
The 65-year-old, who lives in Newport, said the lockdown has “dramatically” changed how he lives his life.
“I have a great personal assistant and run my own business so I am quite active. I try to remain as independent as possible, but I do need a lot of personal care,” he said.
“Lockdown has changed dramatically how I operate. To be able to live independently I have two carers to come to my house for two hours to help me get ready in the morning and also in the evening – my wife also helps me.”
Mr Palmer explained that a few weeks into lockdown his wife became his main carer, after they became worried about the lack of PPE his regular carers had.
He said: “When we came into lockdown we became really concerned because carers were coming and were obviously seeing lots of people every day and we thought it was a bit of a risk because they didn’t have PPE.
“My wife said she would try to do everything herself. Everything has been a lot slower – we are both in our 60s and she has recently recovered from breast cancer, but we are doing our best to be positive and laugh through it.”