Last Updated on 27/03/2024 by Crip Life
Daniella Jade Lowe is a disability blogger and History and Politics graduate, originally from Bermuda and now living in the UK. She lives with spina bifida and hydrocephalus and uses a wheelchair. She has a passion for journalism and politics and aspires to be a disability advocate through politics.
In this personal story, Daniella shares her determination and resilience to achieve her dreams in life and live as independently as possible.
What independence means to me
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 for me. For example, as a student, I remember meeting with the International Office at 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 it 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.
Maintaining good health and nutrition with spina bifida
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As I reflect on my college and university years, I’ve learnt 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 breakdown, 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.
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.
Aspiring to be a disabled advocate
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I receive my income through benefits. I also have a GoFundMe 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 can work, I never had a job as a student.
Journalism and Politics are my passions. 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 a disability in the church, dealing with a disability in the home, dealing with a disability in the workplace, dealing with a 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.
What it takes to tackle wheelchair accessibility barriers
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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 quarterly to express their living needs and concerns. We discuss rent issues, housing benefits, 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. 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 experience because when I moved to England from Bermuda after being accepted into 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.
Accessible public transport: Bermuda vs England
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Public transport 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 in prices and accessibility assistance. 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 transport due to inaccessibility. This causes the disabled community to be more dependent on family and friends, which stifles independence.
Taking responsibility for my personal care
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 which is dedicated to supporting individuals and families as they face challenges arising from spina bifida and hydrocephalus. I am also seen by District Nurses quarterly.
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 these parts 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!!!
You can find out more about Daniella Jade Lowe by visiting her blog The View From Where I Sit and follow her on Instagram.
Can you relate to some of these experiences and challenges that Daniella has faced disabled person? Let us know in the comments box, on social media or contact us to share your own personal story.
Great article, personally don’t think wheelchair taxis overcharge wheelchair users if they are using specific vehicles (I’m not talking about black cabs where fares are fixed anyway). They just have different costs to run their vehicles, insurance, clamps, extra time needed etc. I wish there were more wheelchair taxis available, so we need to accept that to make it a viable option for a driver they have to meet their costs. No one HAS to become wheelchair taxi driver, it’s up to them, and expecting them to earn less than regular taxis isn’t going to increase the number of vehicles out there.