All throughout life, I’ve been encouraged and trained to be independent despite being diagnosed with Spina Bifida and Hydrocephalus at birth. Independence is important to me. This pandemic has actually caused me to live at a higher level of independence, especially, in relation to self care and health care.
Some wheelchair users prefer their own independence because receiving help makes them feel more disabled than they already are. It’s partly about dignity and respect. Other times it can be about disability pride. Their disability pride can be fuelled by entitlement, and identity. Wheelchair accessibility is one right that wheelchair users are entitled to.
Wheelchair inaccessibility causes one to be co-dependent. I experienced this in Bermuda. I also cannot claim benefits at all in addition to relying on family. Fortunately, wheelchair accessibility enhanced my Independent Living. I experienced this in England. Wheelchair accessibility causes one to be independent because you can access things without relying on someone. I also cannot claim benefits while living with family.
For example, when I was eight years old, I got my first manual wheelchair. From that age, I was always encouraged to push myself instead of allowing anyone to push me. This reinforced my independence.
Another level of independence that I’ve experienced was high school. During my first year of high school, the building was nowhere near wheelchair accessible so I required hands on support. However, while in my second year of high school, it was taken away from me. I did everything on my own without a Paraeducator, because, when I transferred to the new wheelchair accessible building, it was assumed that I no longer needed support. This wasn’t a smart move because I struggled under pressure, failed two subjects and had to do Summer School to catch up on credits. This also affected my G.P.A when I graduated. This was quite stressful and frustrating for me. I cried and complained to my parents so they met with the school to sort it it out.
However, it made me more self aware and helped me improve time management. Having an extra pair of hands helped me to navigate the school faster.
The next example was during the first semester of my first year in college. I took classes without learning support for fear that I’d have to pay for it, because I was being treated as an international student instead of a home student. Before my January exams, lecturers raised concerns about my grades and overall progress. When this was realised, I was given assistance from learning support without paying for it. But I must admit, that it made me more organised and it improved my study skills and habit.
Another aspect of independence that I learned, especially in college, is speaking up for myself while living independently. I had to move to another country to further my studies due to wheelchair accessibility issues.
During my first year of college, meeting with the learning support department was very frustrating. Communication between my lecturers and the learning support department always seemed disconnected. The week or day before my exams, lecturers always asked me what was the learning support plan for my exams. This stressed me out because after every meeting, they assured me that they would share our discussion with the staff members. This almost never happened and I found myself repeating all of the information just to ensure my needs were met. This took away from my personal study time.
However, all of these experiences taught me how to advocate for myself and cultivated the desire to advocate for others with disabilities.
Unfortunately, due to struggling to balance studies, personal care and health I got help from disability services. This came in the form of a social worker, carers, district nurses, and a GP, after my first year of college. I received these services because I started losing weight and getting pressure ulcers. This means I had to rely on people more to help me cope with the demands of life. They helped me with cooking, cleaning, laundry and sometimes shopping. It helped me to set my priorities straight and enhanced my independence.
Independence means taking ownership, taking responsibility, and taking action. It’s all part of maturity and putting on my ‘big girl panties.’ This is what independence means to me!