the cost of being disabled

by Rachael Goodenough

Being disabled is expensive. There are many hidden costs government funding cannot always cover, whether it be a new wheelchair, adaptive technology, or even an accessible house. Many disabled people are unable to work and depend on the welfare system for income, and those that can work are often on minimum wage. This makes it difficult to save money without sacrificing basic needs and has led many disabled people to reluctantly turn to crowd-funding websites such as GoFundMe. When Robert West found himself in need of a new wheelchair so he turned to GoFundMe after his efforts with his local service in Huntingdonshire and Access to Work scheme were hindered by a caseworker with “little knowledge of wheelchairs.” He aimed to raise £3,000 for a new indoor wheelchair and hit his target within an astonishing six days. When asked how he felt about disabled people having to fundraise for their mobility aids, Robert said “I find the idea of asking for money for the right to leave my house quite humiliating. It’s a tax on my most basic of human rights, being disabled is already quite expensive, it makes me feel quite small.” Calum Grevers needed to raise £30,000 to move into his own place in Edinburgh and adapt it to suit his muscular dystrophy. He turned to GoFundMe after the Scottish government were unable to fund this enterprise and created the campaign #HelpCalMoveOut. Using his social media, Calum built a network of likeminded people in disabled spaces and started to raise awareness of the internal and external struggles that disabled people face, such as destigmatising the guilt of asking for help, advocating for accessible housing, and highlighting the positive impact of giving disabled people independence. By creating the campaign and social media himself, Calum has been able to control the narrative around him and other disabled people, as he feels that charities sometimes “take advantage of false narratives about disabled people”, pitying them rather than sharing the systemic changes necessary. Similarly, he also feels the local and national media coverage he received concentrated on him as an individual and not the larger situation of legislation and representation for disabled people. This is why disabled content creators like Calum are using their platform to fill in the gaps mainstream society doesn’t quite understand. As fellow disability blogger Shona Cobb says, “Disabled representation on social media has been so incredibly important in my disability journey, and in others. Representation might be improving across all media, but social media gives people like me control over my narrative that I wouldn’t necessarily have in traditional media. Seeing disabled people just about their daily lives on social media has shown me what is possible, and given me a feeling of solidarity when things don’t go well.” These campaigns and bloggers, as well as countless others, seriously demonstrate the need for disabled representation and inclusion, as granting disabled people autonomy and the ability to live independently benefits us all. As Calum himself said, “If you remove the barriers disabled people can live the same life as anyone else.” u