Aussie living with cerebral palsy gives a new perspective on life in lockdown

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For the 37-year-old, who lives with cerebral palsy, the health crisis presents a special risk. He is more likely to become severely ill if he contracts the virus and the risk of community infection is particularly high due his need for constant care.

“Basically, at the beginning of the pandemic, I was in a self-imposed lockdown for 58 straight days. I didn’t leave my house,” Mr Winther told nine.com.au.

“When you require personal care to do everything, there’s no such thing as social distancing.”

Todd Winther, 37, self-isolated for more than two months. (Supplied)

He lives in one of fourteen apartments at a Youngcare residency in Queensland. He has six carers on call to help him with everything from getting out of bed, getting changed and going to the bathroom.

Many of the other residents living around him are living with progressive or degenerative disorders such as multiple sclerosis and Parkinson’s.

“I have a severe disorder, it’s not degenerative, it’s static but if one of the carers came to me and got infected and then went to another resident, they would have a high probably they could die,” he said.

“If I got COVID-19, it would be more severe, but I’d probably survive. If I got infected and spread it to another staff member who was then spreading it to someone with MS I would be indirectly involved in their death and I wasn’t going to take that risk.”

Yet, despite all this, he said a global pandemic isn’t as hard as dealing with the challenges he faces each and every day.

“People talk about the government controls in terms of what they can and can’t do, welcome to the world of a person with a disability,” he said.

“Every minute of your day is controlled, you can’t control when you go to the toilet, you can’t control when somebody gets you out of bed, you can’t control when you leave … disability is not about the impairment, it’s about the lack of choice.

“To be blunt, the restrictions imposed about when people can do things, that’s happened every day of my life for 37 years.”

“The general community was given a window into how things are every single day of my life.”

Mr Winther said he’s spent his life overcoming the overwhelming stigma of people with a disability – a challenge that makes COVID-19 feel like just another bump in the road.

“I don’t want to minimise the virus or the impact of everybody in the community or other people with a disability but I’ve dealt with so many challenges in my life,” he said.

“I’ve spent my whole life subverting those expectations … My biggest task is to prove people wrong every day of my life so in comparison to that the virus isn’t really so bad.”

He said the pandemic has even changed some things for the better – working from home, for example.

“I love doing work from home because I don’t have to worry about going to the toilet or what happens if my chair breaks down on the way to work … to be honest I wish we’d been doing this 15 years ago, it would have made things a lot easier for me,” he said.

Like Mr Winther, 45-year-old Douglas lives with cerebral palsy and has been receiving full care since he was 13.

Lynda has been unable to visit her son, Douglas, due to the risks associated with COVID-19. (Supplied)

His mum, Lynda Maher, said the lockdown has meant her son has been unable to access many of the activities or services that make his life enjoyable.

“It’s been particularly bad for getting out into the community because without that it’s just like living in a hospital and it’s boring more than anything,” Ms Maher told nine.com.au.

She said Douglas usually enjoys going out to play music and also has hydrotherapy classes to assist with his mobility – both have been canned since the start of the pandemic.

“He hasn’t seen his family, he hasn’t been able to come home for his birthday … it’s terrible because they can’t see anybody or do anything,” she said.

Ms Maher can’t afford all the necessary equipment to allow Douglas to ride in her car, so she requires a special taxi to help him get around. Unfortunately, the service canned due to the risk of community transmission and hasn’t reopened since.

“I don’t think restrictions really took into account the disability sector … it’s hard enough for us to understand let alone someone who has an intellectual disability,” she said.

Douglas, who lives with cerebral palsy, hasn’t been able to do many of the activities that he enjoys since March. (Supplied)

“For Douglas and other people with disability to not be able to go out and see people, and he can’t use computers or internet and they can’t zoom people, I’ve only just learnt how to do that so its really hard for them to sit in the same place, day in day out, for seven months.”

Ms Maher has also been unable to go with her son to doctors appointments and dental check-ups despite his needs.

“I couldn’t even get in a taxi and go with him to the dentist and then I get a call saying he wasn’t very happy because I wasn’t there to help.”

Manager of YoungCare, Shane Jamieson, said the challenges in everyday life for the disability community has been reflected in their response to the pandemic.

“COVID-19 Is pretty horrendous … it’s added another layer of complexity to an already complex life,” Mr Jamieson told nine.com.au.

“One of the things we noticed is that people with disabilities are pretty resilient people and that’s born out of necessity built up over many, many years.

“It’s a big part of life, every flu season people need to be extremely careful because of comprised immune systems.”