'You don't look disabled enough' - life with a fringe disability

Date: 2024-10-27

'People say I don't really need a wheelchair'

Amy Anderson Amy Anderson stood by a tree and wearing a black jacketAmy Anderson
Amy Anderson was diagnosed with cerebral palsy aged two

Amy Anderson says she already felt on the "fringe" of the disabled community when a colleague's husband questioned whether she genuinely needed a wheelchair. She was diagnosed with cerebral palsy aged two and her symptoms vary day to day. The comment, while not intended to cause offence, had hurt. And so her "Not Disabled Enough" social media campaign was born.

"Sometimes I feel like I'm not disabled enough to do stuff," Amy says. "But on the other hand, too disabled to do other things.

"I can't be the only one feeling this way."

Amy Anderson Amy wearing a yellow t-shirt and stood by a lake with mountains in the backgroundAmy Anderson
Amy is currently on a gap year and travelling the world

Amy, 31, a primary school teacher from Woodbridge, Suffolk, set up the Not Disabled Enough page in May.

The idea came from speaking with friends who agreed more awareness was needed for people like Amy who used a wheelchair part-time.

Amy now uses Instagram, TikTok and a blog, to share experiences of someone who feels "stuck in the middle".

"Once I was in my wheelchair in Woodbridge and I saw a colleague, and she said 'I've never seen you in a wheelchair', and I overheard her husband say, 'but she doesn't really need it, does she?'," Amy says.

"I hear stuff like that all the time.

"Even when I was younger some of my family who didn't know me that well would ask why I was using a wheelchair.

"While people on the other end of the spectrum often say, 'I didn't know you were disabled, I didn’t even notice' which means I sometimes miss out on support."

Amy Anderson Amy in a red coat and wearing a Minnie Mouse head piece while sat in her wheelchair at Disney LandAmy Anderson
Amy has been posting about her experiences of travelling on her blog and social media pages

Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination.

It is caused by a problem with the brain that develops before, during or shortly after birth, and affects about one in every 400 babies born in the UK each year.

The condition often puts a lot of strain on the body and cause problems such as painful joints.

"There's only a small percentage of people in wheelchairs who actually can't walk," Amy says.

"A lot of the time it's for fatigue or longevity - so they can manage to do things.

"People thought I was just being dramatic or would say 'but you can walk'."

Anderson family Amy as a baby in an incubator covered by a pink blanketAnderson family
Amy says she arrived into the world following a "traumatic birth"

Census data published last year showed 9.8 million people in England reported having a long-term disability which limited their day-to-day activities, while NHS figures published earlier this year showed 665,000 people in England were registered wheelchair users.

Amy adds: "I know I'm never going to be able-bodied, but how do I push myself in the other direction of being a proud member of the disabled community?"

Amy Anderson Amy as a young child wearing a light blue top and a tinsel crownAmy Anderson
As a child, Amy wore splints to help her stand and walk

In May, Amy quit her job and rented out her house in Felixstowe to travel the world for a year.

She says she initially applied for a working visa in Australia but was denied due to the state being concerned about potential medical costs, even though Amy reported being largely self-sufficient.

Her sights were then set on New Zealand where she faced similar issues.

"I probably cried for a week," she says.

"I can't hike up mountains, go on trains or go on rickety buses. It would break me and I wouldn't enjoy it.

"But I also don't need hoists and carers to come with me."

Amy Anderson Amy stood at the front of a class in front of a board and teaching childrenAmy Anderson
Amy does not use her wheelchair at work

Amy eventually got a job at a summer camp in the United States where she worked with 30 girls aged between 7 and 11.

She says the camp made adjustments to help accommodate her disability.

"Working with kids is in my soul and I want to teach them that disabled isn't a dirty word, and when I say it I don't have to flinch," Amy adds.

She now hopes to travel to South Africa and Ireland.

Amy Anderson Amy in a high visibility vest and sat on a brown horseAmy Anderson
Amy volunteers at a local riding school

Amy admits there have been times in the past where she has not asked for help.

In February, she uploaded a video to social media of her crying in a Paris train station, having not requested special assistance because it "felt like cheating someone who really needed it".

"I am learning that I am enough, my needs matter and they are my own," she says.

"I want to raise awareness to say 'yes I am managing but there's a lot that's going on behind the scenes'.

"But also to show disabled people that we can do this, and I do feel a part of your community."

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