Advocating for everyone
Her name is Louise, but to her thousands of followers, she is @justawheelchairgirl - the young woman behind an inspiring profile on Instagram, sharing her life and raising awareness about disability.
Photographs: Louise Justesen
Text: Michaela Medveďová
Louise feels there is a huge lack of representation in the media. “My goal with my Instagram profile has always been to show that it’s very possible to live a happy and fulfilling life with a disability. Of course, there are things that I can’t do - but there are so many more that I can,” says Louise.
As an infant, Louise was diagnosed with spinal muscular atrophy type 2 (SMA2), a progressive neuromuscular disease. As a result, she got her first electric wheelchair at two.
“I don’t really think about my disability daily because I’ve never known anything else. But, having a disability like mine can be very time-consuming. Everyday tasks - getting up in the morning, taking a bath, getting in and out of the car, you name it - take longer because I need help.”
When she was a child, they hired her first personal assistant. When she moved into her own place, she began needing assistants 24/7. “Some people prefer not to have a close relationship, but it wouldn’t feel right to me. We spend so much time together, so it’s important for me that we enjoy it.” When hiring an assistant, it’s not essential for her if they have experience - in a way, hiring one who has not tried this type of job before can be easier. She considers chemistry, the same sense of humour, shared values, and the same attitude towards life most important.
The need for allies
Louise spends a lot of her time advocating for herself - and for disabled people in general. But getting the help, she needs to live her independent life takes time, patience, and effort. “In Denmark, most disability-related things are paid for by the kommune (municipality), region, or government, but it isn’t just handed to you. You must apply for it - even the most basic things can take years.”
In general, she feels lucky to live in Denmark and get the opportunities she has. “We have some strong disability groups and advocates who have fought hard over the years to ensure the rights we have now.” Despite her disability, she attended the same elementary school as her friends. She attended university and now lives in her own house. This is not the case for many others in different countries.
However, even in Denmark, it’s getting more challenging to get proper help. One thing that needs to change is the lack of SMA treatment - one that would stop Louise’s disability from progressing and maybe give her some strength. “Denmark has some of the strictest rules in the world regarding treating SMA patients, only offering treatment to a limited number of children, even though so many other countries also offer it to adults.” She and many others are fighting very hard to raise awareness about this to change the rules. “We’re not there yet, but we’re doing everything we can to ensure that every SMA patient in Denmark gets access to this treatment that can be life-changing for so many of us.”
Some disabled people in Denmark also lose the help they need to continue living independently. “It’s a horrible development, and it’s quite scary to see one’s peers losing their help, knowing it might as well have been me. That’s one of the reasons why advocating for disability rights is so important. We must tell our stories so non-disabled people realise these things and hopefully become allies.”
"So many people wrote to me saying how great it was to see a disabled person working with a big fashion brand."
To raise awareness and create a positive representation of people with disabilities was behind the decision to start her Instagram account. “You rarely see people in electric wheelchairs on TV or in magazines. As a child, I didn’t know what to expect from life when I grew up. I didn’t know anyone personally, and I didn’t see myself in books or movies.” Louise shares significant parts of her life on her profile. “But I’m also a very private person, so I choose not to share things. I didn’t create this profile to bring focus to me as Louise - the reason was to bring focus to me as a disabled person; on the challenges we experience. I do my best to show my life and what it can be like to have a disability.”
But fighting the system to get the help they need can be draining, so Louise understands why some people with disabilities don’t have the energy to do more advocacy. “I think we need non-disabled people to advocate for us, stand up, and help us fight the injustice we meet. It would be so amazing if people outside the disabled community would call out their local restaurant or store if their place isn’t wheelchair accessible. One thing that people often forget is that everyone can become disabled at any given time. So disability rights are, or should be, in everyone’s interest.”
Louise is grateful for the opportunity to show non-disabled people that her life isn’t much different than theirs. “I hope my profile will contribute to people behaving more naturally when talking with a disabled person. I don’t want people to treat me any differently. Just be polite and talk to me like you would talk to anyone else. One of my biggest pet peeves is when someone talks to me like a child. I’m a capable adult, and it frustrates me when I’m not being treated as one.”
She also appreciates the community she’s built with her profile which continues to grow. She loves receiving messages from fellow disabled people who tell her that her stories and experiences are relatable. Louise has collaborated with Zalando several times and received an incredible response. “So many people wrote to me saying how great it was to see a disabled person working with a big fashion brand. This shows how much our community longs for representation, and I feel proud to be a part of it. I also get messages from parents of children with disabilities saying they feel more reassured about their children’s future after seeing how I live my life.”
Knowing that her words and shared experiences are helping others is nothing short of an incredible feeling for Louise. “It’s both empowering and humbling. I’m so happy I’ve created a platform where that’s possible.”