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How Social Media Has helped me live with a rare condition

Maxwell highlights how social media has helped him living with spinal muscular atrophy, start his own business and find volunteering opportunities.


My name is Maxwell Mcknight and I am an eighteen-year-old university student with a rare condition called spinal muscular atrophy (SMA). It's a muscle-wasting inherited disease, meaning both my parents have the faulty gene. Progression of the disease means I am wheelchair-bound and rely on a carer and people around me, such as my partner. I have always believed I can achieve anything, but the world for me and many disabled people may be more challenging due to infrastructure and social norms. However, now more than ever, disabled people can share their voices and be heard by others, finding opportunities through social media.


My social media journey began in 2019 when I started a Drone business. Many of my friends had part-time jobs but due to my condition, this was hard as many of the jobs available in my town were manual labour related. Having muscle weakness meant jobs like these were not an option.

Like any other student, I wanted to be financially independent of my parents. Travelling to a different city or town was not possible while studying. This is when I became innovative and used a hobby of flying drones as a business idea. I could not only pick the hours I work but also generate an income and become more independent. I sold aerial photos of cars, houses, videos of events and more.


Social media allowed me to do all the marketing on Instagram and created an opportunity I would not have had without it. For many other disabled people and me, independence is harder to achieve because of barriers out of our control. This is why adaptation to our individual circumstances is vital. As a result of starting a business, I achieved what I wanted: an income. I also improved my entrepreneurial skills while balancing my condition, education and social life.


I have loved the business world since the start of my GCSEs. Last year I started my bachelor's degree in business management at Anglian Ruskin in Cambridge. This required enormous planning, such as sorting out carers for the first time. I had to learn to manage bank accounts, correspond with agencies and much more. It was a massive jump to become fully independent, one I am so happy I made.


Due to the shock, but also the realisation of what extra responsibilities I had solely because I was disabled, I decided to document as much as I could on social media. I give insight into my life through Instagram and TikTok. I make content to help others in similar situations and educate the wider public. Social media has allowed me to learn about my own disability while also learning about others.


Before I created my social media accounts, I had little contact with people with rare conditions. I have learned that connecting with others has allowed me to answer questions I had about my disability, but also predict future problems I might face. This comes from many people who have been through it before giving advice. This information is more valuable than any guide and has helped me a lot so far.


Awareness from my page on social media has allowed me to volunteer at SMA UK Charity. With the help of employees at SMA UK and another volunteer, we have created an SMA young adults and teenager network group. These networks combined have over 45 people living with SMA sharing their experiences. I'm incredibly passionate about it as it allows everyone to collectively come together, tackle problems and issues or have a laugh about their day. This allows us to support each other in a non-invasive way at people's own will.


Social media has helped balance the playing field like all technology has done for the disabled community. It allowed me to find accessible opportunities and most importantly, connect with others. When living with a rare condition, it is easy to feel alone against the world. However, I have learned there are also other people fighting battles and challenges like my own. Social media is an extremely powerful tool and my advice to disabled people would be to fully harness its potential. Connect with others and make new friends using hashtags related to your disability. To anyone looking to help support the community, understanding is so important and listening to disabled creators is an excellent way of learning.


 

Socials

Instagram @maxwellmnight


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