A typical day in my life, requires lots of motivation, dedication and can be time-consuming. Being independent while having a disability, requires one, like me, to be assertive and diligent. It also requires me to be an independent thinker and show personal initiative and interest in my personal affairs.
Practising independence helps me to empower myself. Having a life of independence through disability, forces me to prioritise, manage time and advocate for myself by any means necessary. This means that I have a lot to think about. Independence, to me, is a combination of freedom and maturity at a high level. The good thing about independence for me is that it allows me to learn, mature and try new things. It means taking control of my life. Exercising independence, also causes me to be more resourceful and creative. The bad thing about independence for me is that it exposes my strengths, weaknesses, insecurities and worries.
However, independence for a person like me living with Spina Bifida and Hydrocephalus, creates more worries and fears for my friends and family, than me. For example, as a student, I remember meeting with the International Office at the Bradford College, and during this meeting they seemed more concerned about me getting homesick, than they were about me completing my A-Levels. Despite this, I overcame and finished. The truth about this matter called independence is that my parents and guardians won’t always be around to help me. This is ultimately the main motivator. Everyone likes independence, but I think those who are physically challenged value their independence more than the average able-bodied person because they experienced a limited level of it.
Statistically, patients with Spina Bifida frequently experience social isolation with limited employment opportunities and restriction of independent living, neurological and intellectual impairment, and orthopaedic and urological consequences of their condition, unlike the average able-bodied person. This is why living independently is a big deal for me.
As I reflect on my college and university years, I’ve learned that my diet was critical. As a freshman in college, I neglected myself in the area of nutrition and diet while studying. As a result, I lost weight and experienced skin break down which subsequently resulted in pressure sores and hospitalisation. Ever since then, I have started and maintained a high protein diet. This is so important for me because a non-wheelchair user, doesn’t have to worry about pressure sores, if they neglect themselves and lose weight. Pressure sores can also be life threatening if ignored or mistreated. I also attend the annual Spina Bifida Clinic in London where I get a general check-up to make sure everything is okay and to focus on what I need to improve. Unfortunately, the Chelsea and Westminster Hospital in London is the only hospital in all of England that provides these clinics twice a year. These clinics have helped me to improve my health.
Nutrition is also critical in my daily routine because it helps with general health, skin repair and maintenance. As part of my dietary needs, I’m expected to maintain a high protein diet. In relation to being born with Spina Bifida, nutrition is pivotal because, according to research, Spina Bifida occurs due to a lack of Folic Acid in a pregnant woman’s diet. Research also suggests that Spina Bifida and other congenital disabilities are the result of obesity. So nutrition is an important factor for me. All of this cost money.
Source of income
I receive my income through benefits. I also have a Go Fund Me account. This is how I support myself financially. I am currently an unemployed university graduate with a BA degree in History and Politics, actively job searching just to get extra work experience to start my career. Even though I have the ability to work, I never had a job as a student. Journalism and Politics are my passion.
I aspire to be a Disability Advocate through politics. As a Disability Advocate in Politics, I will always endeavour to be an advocate for people with special needs. I will teach them to empower themselves. I will also hold disability forums to discuss the topic series, ‘Dealing with Disability’. I will discuss themes like, Dealing with Disability in the Church, Dealing with Disability in the Home, Dealing with Disability in the Workplace, Dealing with Disability in the Education System and Wheelchair Accessibility.
I will use these forums to come up with solutions to improve the lives of people with disabilities and to help them empower themselves. I have contemplated starting a business but I’m not sure what type of business to start. I have also contemplated being an Accessibility Consultant.
Compared to Bermuda, wheelchair accessibility is great in England. I’m currently living in a housing complex, under a housing scheme focused on those living with disabilities. It is wheelchair accessible for wheelchair users like me. All residents meet with the landlord on a quarterly basis, to express their living needs and concerns. We discuss rent issues, Housing benefit, communal laundry issues and maintenance. We also have annual Christmas parties and summer Barbecues.
The college and university that I attended were fully wheelchair accessible. This is positive compared to Bermuda. All throughout my education in Bermuda, it was hard to find a school that was fully accessible for a wheelchair user. England’s education system in general is quite progressive and conducive for students with disabilities.
My only analysis of the British system is that they have a dictatorial way of doing things. In my opinion, they tell you what they think you need, instead of you telling them what you need. I know this from personal experiences because when I moved to England from Bermuda after being accepted into the Bradford College, I was instructed to invest in an electric wheelchair without an official assessment. I disagreed with this decision because, according to Wheelchair Services, people who cannot self-propel, only, qualify for an electric wheelchair. But I am thankful, because it makes mobility faster. My electric wheelchair is also height adjustable which makes it easier to reach high objects and counters. The downside to using an electric wheelchair is that the traction of the wheels makes it harder and more dangerous to move through snow and rain. Mud is also bad for the wheels.
Transportation : Bermuda versus UK
Transportation is great in England. I can catch the trains, buses and taxis. Taxis and trains are equipped with portable ramps. However, when ordering taxis, I must specifically ask for a wheelchair taxi. Wheelchair taxis are usually equipped with either portable or remote -controlled ramps. The only problem that I have with using taxis is that the prices that they charge a wheelchair user aren’t always consistent. In other words, they tend to take advantage and overcharge wheelchair users. I only tend to catch taxis if there’s inclement weather or if I’m running late and I don’t know where a certain venue is. Trains and buses are very reliable from prices and assistance to accessibility. Wheelchair users are always urged to book assistance by phone before travelling on the train. Unfortunately, Bermuda has been a different experience. Not many wheelchair users take public transportation due to inaccessibility. This causes the disabled community to be more dependant on family and friends, which stifles independence.
I am responsible for my own personal care, but I do have carers to help me with domestic tasks twice a week through an agency called Dignicare. They were assigned to me through my Social Worker. I also receive additional support from a disability service, called the Shine Charity who are dedicated to supporting individuals and families as they face challenges arising from Spina Bifida and Hydrocephalus. I am also seen by District Nurses on a quarterly basis. The bathroom in my house is equipped with rails to make transfers easier.
Using public bathrooms can be uncomfortable and in-conducive at times. For example, I don’t like using the airport bathrooms in England, while travelling, because I have to wait for the security guard to bring the key to unlock the bathroom door, instead of having the luxury to go in and out as I please. But at least they’re wheelchair accessible.
Since graduation, I’ve found this part of my life interesting and quite stressful, but overall, I look forward to starting my career doing what I love. This is what it takes to be me. That’s how I roll!!!