The View from Where I Sit

Tag: disparities

  • What does Independence mean to me?

    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!

  • Dealing with Disability in the Home: Second edition of series

    By: Daniella Jade Lowe

    Housing and assisted living can be quite scarce for people with disabilities. Most times people with disabilities live with family where they rely on parents for support.

    While living with Spina Bifida and Hydrocephalus, I’ve had the privilege of living in two separate countries, which means I’ve had two separate homes. I was born in England, raised in Bermuda. I have dual nationality, which has resulted in dual perspectives on disability.

    I lived with my parents in Bermuda during my early school years, then I lived independently in England. I completed Primary, Middle and High School in Bermuda then completed college and university in England.

    Living in both countries has been an eye opener for me especially from the perspective of being a wheelchair user.

    Housing in England vs Housing in Bermuda

    Housing in England is completely different to Housing in Bermuda, especially for people with disabilities.

    During my college and university years, I lived in student accommodations that were modified for wheelchair users. Cultural differences impacted this. Once I completed university, I transferred to Assisted Independent Living. I live at a housing scheme called Five Oaks Housing Scheme under Sanctuary Housing Association in Ilkley. Sanctuary Housing Association is a housing corporation dedicated to the disabled community in the UK. https://www.sanctuary-housing.co.uk/.

    I have a great landlord who meets with the residents and I on a quarterly basis. She also communicates effectively, in-person, by phone and email. My bathroom is equipped with handrails to make transferring easy. I also use a profiling bed in addition to my height adjustable electric wheelchair. All counters and tables are low enough for me.

    However there are other people in my flat who require the use of assistive technology.

    Residents who are either unemployed or actively job seeking are eligible for Housing Benefit pays rent in the UK.

    One recurring issue that I’ve experienced in relation to housing is having access to showering facilities instead of bathing facilities. I personally prefer baths to showers.

    According to my research, Bermuda offers Summerhaven Trust. Summerhaven Trust is an assisted living residential complex that provides the opportunity for people with physical disabilities to live in the community. https://helpingservices.bm/listing/summerhaven-residential-home/

    The Bermuda Housing Corporation provides loans for the elderly and the disabled in Bermuda. https://www.bhc.bm/senior-disabled-loans/.

    For the last house that I lived in, before moving to England, my family sought to make the house wheelchair accessible with an escape route for me in case of a fire or flood, by the patio area, but the Department of Planning wouldn’t let us do so because it was too risky. Bermuda has legislation for this. https://planning.gov.bm/index.php/planning-legislation/.

    During my high school years, my father teamed up with a family friend to implement a lift at my house at one point because there were stairs to access and exit the house. Bermuda has legislation for this. http://www.bermudalaws.bm/laws/Consolidated%20Laws/Building%20Authority%20(Elevators%20and%20Lifts)%20Regulations%201962.pdf.

    Additionally, the Disabled Living Allowance is also available while living out here. I’ve also received additional support from Carers like Dignicare and Visioncare.https://www.dignicare.co.uk/, http://www.visioncare.co/.

    https://www.ilkleygazette.co.uk/news/10128744.ilkley-community-centre-back-in-business-after-a-two-year-closure/

    Wheelchair Accessibility: Functioning in Dysfunction

    This is one of the main reasons why I moved to England from Bermuda as a high school graduate.

    Wheelchair Accessibility and mobility issues are just some of the problems that I face as a wheelchair user. Access alleviates the amount of limitations and restrictions on wheelchair users. Failing to ensure wheelchair accessibility is neglecting to provide reasonable adjustments. It is like functioning in dysfunction.

    However, despite all of this, people with disabilities, like me, can lead independent lives even though we experience a restricted level of independence. Yes we do have preferences, goals and ambitions. We also have rights too.

    Throughout this whole ‘Dealing with Disability’ series, I’ve learned that both countries have endeavoured to make mandatory reasonable adjustments for people with disabilities through legislation and finances. Reasonable adjustments, finances and legislation enable us to live independently. This is the way we deal with life.

  • Dealing with Disability in the Church: Third edition of series (Three Perspectives)

    Dealing with Disability in the Church: Third edition of series (Three Perspectives)

    By: Daniella Jade Lowe

    Dealing with Disability in the Church hasn’t been all that bad for me. First of all, I’d like to start out by saying, I’ve attended church all my life. I love church. I get involved in church services mainly by serving on the Audiovisual/Technical Team. I enjoy this.

    While living in Bradford I noticed that their churches have their own private buses to pick up and drop off their members.

    Now I’ve got one ‘bone to pick.’ Why are public buses in England expected to be wheelchair accessible but not private buses? Just an observation.

    However, whenever I asked to use it instead of taxis, I was told they do not take wheelchairs for liability reasons. Also I noticed the church I first attended, had a wheelchair section for easy access in case of a fire. I also attended a university campus church in Bradford.

    On the other hand, while living in Ilkley, there is one church that has a disability ministry for those with intellectual disabilities called the Ark, which meets the first Sunday of every month from 3pm to 6pm. Some other churches may even have Sign Language interpreters for the hearing impaired.

    In relation to handling disability, churches should take on The Good Samaritan Approach.

    Prayer

    I appreciate prayers. I have been asked to be prayed for and gladly accepted such. It can be slightly frustrating when your expectation for a change is so high and it doesn’t come which has discouraged me at times. But I do believe in miracles.

    However, I also know someone who has autism of a different persuasion. Her experiences in the church have almost never been positive. Many times, Christians have prayed for her to be healed of autism.

    She does not personally want to be “healed” of autism, because she believes that God intentionally allows some people to be born with autism or Down Syndrome for his own good reasons, and that these people are fearfully and wonderfully made in the image of God, and perfect just the way they are. They do not need to be healed; God made them like that.

    She feels that her autism is an integral part of who she is, and is not a negative thing, but rather a positive one. She does not feel that autism holds her back.

    When church people pray for her to be healed of autism, without asking her first whether she wants healing, or despite my objections to what they’re doing, that does not empower me. They are deciding on my behalf what direction they think my life should take, but they do not have that right; it’s my life. People with disabilities deserve to be in control of their own lives.

    Instead of being “healed,” all she wants is to be accepted by the church for the peculiar, wonderful, autistic person who she is. She needs acceptance and inclusion.

    When people pray for her to be healed of autism, she perceives them to be indirectly saying,

    “I want God to change you into a normal person, for my own comfort, because I can’t handle that we have a disabled person in our church. I don’t want to deal with having to include disabilities, so it’s easier if I can just try to heal them instead.”

    She fully believes that God does have the power to heal people. But she also believes that when church members wish to pray for a disabled person’s healing, they need to first ask that person whether he or she wants healing or not. If the disabled individual declines the offer, church members need to fully respect this, and not keep pushing healing on the person.

    It is good to be content and happy with life. I do agree to some extent. There is also a way of embracing disability without accepting it as if there’s no hope.

    In other words exhibit faith, despite the odds! Don’t glorify the problem, glorify the problem solver.

    Stating the facts about one’s medical condition isn’t necessarily claiming it but acknowledging that something is different about the way a person functions. We shouldn’t live in denial and shame, especially if people ask genuine questions out of curiosity.

    The Stigma around Medical Intervention

    Another subject I don’t understand is the notion that surgery or taking medicine isn’t faith. I believe God can heal through medical science. Sometimes medical intervention is part of the process. There is also nothing wrong with prayer and a psychologist, social worker or carers.

    Besides, faith without works is dead. I also notice that people tend to judge by appearances. I’m not looking for pity but inclusion.

    Wheelchair Accessibility: Functioning in Dysfunction

    Some churches in England have a health and safety policy where they have designated seating for the physically challenged. They’re also wheelchair accessible for the most part too.

    Wheelchair Accessibility and mobility issues are just some of the problems that the physically challenged face. Access alleviates the amount of limitations and restrictions on wheelchair users. Failing to ensure wheelchair accessibility is neglecting to provide reasonable adjustments. It is like functioning in dysfunction.

    I get really annoyed with drivers who park across dropped kerbs. Dropped kerbs are meant to make it easy for wheelchairs to enter and exit sidewalks. I think that drivers should either be fined or vehicles towed. Alternatively, if the church building isn’t wheelchair accessible, there is the option of watching services online, but then the problem with that is, one can’t mix and mingle with other believers. I suppose this will always be an issue depending on where one lives. There are many other issues that this subject can cover but this video should do the job. Why should your church be Disability Friendly?

  • Dealing with a Disability in the School (Mental vs Physical): Fourth edition of series

    By: Daniella Jade Lowe

    In this article, my friend and I are going to share our experiences in dealing with both mental and physical disability in the school.

    Dealing with physical disability in my life has been interesting and quite a learning experience for my family and I. My educational career has been interesting because I’ve lived and studied in Bermuda and England.

    Bermuda deals with disability in schools differently to England. England is more advanced, probably because it is much bigger and there’s more access to resources.

    For example, I attended private Nursery and Preschool in Bermuda, because it was hard to find someone to take disabled kids for liability reasons. There are currently no charities dedicated to Spina Bifida and Hydrocephalus in Bermuda. ‘Teach Us All!’

    From primary school to high school, since I claimed disability, I got Paraeducators, nowadays, known as shadow teachers in Bermuda. In Bermuda, I also got extra exam time, an exam scribe, a separate room and exam invigilator. I experienced the same in England.

    During my first year of primary school, my mother visited everyday just to make sure that the school was doing their job. However, the principal threatened to put a restraining order on her, so she stopped.

    In England, exam scribes and note takers aren’t expected to know anything about the subjects, they’re just expected to make notes and write exams for the student. This holds the students accountable for their own education and success. Students must choose between extra time or an exam scribe, not both to prevent cheating. These exam scribes and notetakers come from an external agency called Clearlinks. Clearlinks employs them, not the university. Students also get Study Coaches and specialist equipment. Ergonomic Assessments are also required for wheelchair users.

    Discrimination

    During my educational career, there was one recurring issue that I encountered at every school I attended. This was ‘the right to an education’.

    The Human Rights Act protects the right to education within all existing educational institutions. It applies to primary, secondary and higher education. So why did my parents have to fight to make sure I got into mainstream, public education?

    Why were there some teachers at the schools that I attended, who refused to teach me simply because they disagreed with my rights to be there?

    As someone who has a physical disability, I never understood this. Besides, the Human Rights Act 1981 including the Universal Declaration of Human Rights and the European Convention on Human Rights applies to Bermuda too.

    My high school years were quite tricky. In Bermuda, there were two public high schools to choose from. One high school was wheelchair accessible from its inception, whereas the other one wasn’t. I was hoping to attend the wheelchair accessible high school because it was easier to get around, however I went to the alternative high school because even though the one I wanted had easy access, integration was a problem. ‘Teach Us All!’

    I felt this was unfair because I was marked down for attendance and my class participation was affected, especially when there was a wheelchair accessible alternative. In relation to specialist equipment, my parents and I invested in a Garaventa Stair Trac from Canada, which was designed to get me up and down staircases. The only staircase it wasn’t compatible with were spiral ones.

    Fortunately, after the first year, I transitioned to a newly refurbished and wheelchair accessible building equipped with ramps, lifts and flat surfaces. This made attending classes a lot easier and improved my attendance record and class participation.

    However, I went through my second year of high school without a Paraeducator because the school felt that I should be able to cope. My parents and I disagreed with this. Having a Paraeducator made it easier to transition from class to class within five minutes. Having that extra assistance of a Paraeducator also made test taking and note taking more manageable.

    Unfortunately, I had to complete summer school that year for failing Maths. Things improved after receiving a new Paraeducator the following year.

    After high school, my first year of college was quite stressful and intense. I was enrolled to complete A-Levels. I had just moved from Bermuda to England after graduating from high school. I had to familiarise myself with a new education system and a new environment. The teachers weren’t as understanding or empathetic towards my educational background, learning styles or needs. The A-Level programme was quite competitive where some lecturers only put their best cohort of students up for January and May exams leaving the weaker students out, while other lecturers put a whole class forward and let them ‘wing it’ for the experience.

    On this particular course, I felt discriminated against because, unlike the rest of my lecturers, my English Literature didn’t give me a shot at a mock exam in preparation for the real exams. She told me that I wasn’t working at the ‘A-Level standard.’ In response to this, I complained to the Directorate of the college with an unsuccessful outcome.

    Mental Health

    Alternatively, dealing with mental disability is different. My friend’s biggest problems have been, firstly, depression, which university recognised, but I don’t think most people in general have much idea of the impact of their actions and a lot are incapable of being nice, full stop.

    According to the Equality Act 2010, depression is classified as a disability, and anyone with it is covered by the Act (https://www.mind.org.uk/media-a/3123/disability-discrimination-2019.pdf). This needs to be reinforced.

    Integration in Mainstream School versus Special Education

    Even though special education has its place in society, especially for those with severe disabilities, it is better for them to be integrated into the mainstream public education because mainstream qualifications are given more value than special qualifications. Public mainstream colleges and universities recognise mainstream qualifications not special qualifications. Special education may also possibly undermine one’s full potential. ‘Teach Us All!’

    For example, I had a Canadian friend in university, who had Asperger’s Syndrome, that went to special school all his life, and had to complete his G.E.D before starting university in England, because his special qualification wasn’t accepted by the university’s standards.

    However, when I was in school, I was integrated all throughout my educational career, but two of my subjects like P.E and Maths were modified due to having a physical disability and additional learning difficulties.

    Schools are also expected to conduct risks assessments for health and safety reasons. They should also provide a Personal Emergency Evacuation Plan in case of any emergencies like fires or flooding. This is what I got during my college and university years.

    All schools have some level of a duty of care and can be held responsible for accidents.

    I am in full support of integration, but I think the best way to ensure and reinforce this is to provide extensive teacher training. Colleges and Universities in England have Student Councils and Student Unions that include Disability Officers on their teams. Also at the primary school level in Bermuda, there is a PTSA Board. I think PTSA Boards may need to include a special element specifically for disabled students, similar to British colleges and universities’ student unions and councils.

    Integration should also include modification not accommodation. When a student has an Individualized Education Program (IEP) you’ll likely hear the word accommodation. An accommodation changes how a student learns the material. A modification changes what a student is taught or expected to learn.

    Homeschooling is another viable option which may help decrease discrimination and cater to personal needs.

    Wheelchair Accessibility: Functioning in Dysfunction
    Wheelchair Accessibility and mobility issues are additional problems that wheelchair users face daily. I experienced this many times in Bermuda, especially at school. Access alleviates the amount of limitations and restrictions on wheelchair users. Failing to ensure wheelchair accessibility is neglecting to provide reasonable adjustments. It is like functioning in dysfunction. Fortunately AccessAdvisr helps to tackle this in England. I still think that people must be mindful.

    According to the British Government website, anyone can apply for a dropped kerb in England (https://www.gov.uk/apply-dropped-kerb). However, I get really annoyed with drivers who park across dropped kerbs. Dropped kerbs are meant to make it easy for wheelchairs to enter and exit sidewalks. Some drivers even park on top of the sidewalks blocking the walkway. We need to clamp down on this with a fine both in the UK and Bermuda.

    So to conclude, I think reassessing wheelchair accessibility, integration and modifications in mainstream public education are needed to improve the way disability is handled in the schools, especially in Bermuda. Schools must become Disability Confident. This is what I suggest in ‘Dealing with Disability in the School.’

  • Dealing with Disability on the Job: First edition of series

    Dealing with Disability on the Job: First edition of series

    By: Daniella Jade Lowe

    This is the first segment of my article series ‘Dealing with Disability’. In this article, I will cover Dealing with Disability on the Job, using examples from my personal experiences.

    Lived Experience

    How does one handle disability in the workplace?

    While living in Bermuda, I’ve had sporadic summer jobs and work experience. One paid job was working as a Junior Counselor at an inclusive Summer camp for disabled and non-disabled children.

    Another paid summer job included representing Bermuda at the London 2012 Paralympic Games as a reporter. That was fun and unforgettable.

    However, after graduating from university in 2017, my real career development and job searching began. My personal experience with job searching has been very tough.

    Job hunting can be quite frustrating for the disabled community. We have special skill sets based on level of ability.

    The problem is, we need a job to get work experience, and we need work experience to get a job. Going from interview to interview without any success can be quite discouraging.

    Nowadays, there are an increasing number of disabled people starting businesses because the job searching and interview process is proving to be difficult.

    If you desire to apply for benefits, you must be eligible for it. Before one is eligible, they must have a financial assessment. The unemployed who are actively seeking work can apply for the Jobseekers’ Allowance which is paid into their bank accounts from their local Jobcentre, fortnightly.

    There is also the Employment Support Allowance and Universal Credit that one can apply for.

    Business owners are entitled to the Income Support Scheme. All of this is provided at the local Jobcentre Plus through the Department of Works and Pensions.

    Purple Tuesday is an accessibility initiative for businesses and I am proud to know that Bermuda has joined this community. This initiative promotes inclusive marketing for the disabled shopper.(www.purpletuesday.org.uk)

    All employers are expected to make reasonable adjustments, especially for wheelchair users. They’re also expected to conduct risks assessments for health and safety reasons. They should also provide a Personal Emergency Evacuation Plan in case of any emergencies like fires or flooding.

    From personal experience, I know that, the Park Place Jobcentre in Leeds, England, definitely prioritises and values the disabled community because they take precautionary measures first.

    For example, during a placement that I completed under the Department of Works and Pensions at the Park Place Jobcentre, I had to complete a risk assessment for them to make reasonable adjustments in order for me to start the placement. This included checking the accessibility of escape routes for fire drills.

    All employers have some level of a duty of care and can be held liable for accidents.

    Employers must look at job design. Job design should play to people’s strengths. Talents and skills are important.

    Employers should not give disabled people jobs out of sympathy. Problem solving skills make disabled people good candidates because they always have to overcome barriers which could make one employable.

    Inclusive Workplaces

    Channel 4 is a Disability Confident employer and they judge job applicants on their abilities against job descriptions. They try their best to recruit from groups in society that are underrepresented.

    Job Agencies for the disabled include Remploy, Evenbreak and Scope. Remploy helps get our disabled community into cleaning jobs unless they have alternative career goals.

    There’s a consultation agency called Inclusive Employers which also does this. Inclusive Employers is an organisation created to help employers develop an inclusive workplace, avoid the pitfalls of discrimination and get more from their workforce.

    Inclusive Employers provides knowledge and networks to help build workplaces where people feel valued, and can add value. Their employer members are committed to creating an inclusive workplace, maximising the potential of all employees. They strive to lead the way in breaking barriers and building success.

    Delsion Ltd. is another inclusive employer known as the People & Development Consultancy. They’re the award winning specialists in Learning & Development, Diversity & Inclusion and all things that help people and organisations reach their true potential.

    Why should organisations employ disabled people? Why not? Political correctness is the enemy of inclusion. Political correctness is the avoidance of forms of expression or action that are perceived to exclude, marginalize, or insult groups of people who are socially disadvantaged or discriminated against.

    The alternative is working from home but it doesn’t necessarily promote inclusion or diversity neither does it clamp down on discrimination.

    Another interesting aspect is blind interviews vs physical interviews. Blind interviews are better than physical interviews because candidates are judged on skills not memory or tests.

    Using technology and specialist equipment can make workplaces more inclusive for people with disabilities too.

    Wheelchair Accessibility and mobility issues are just some of the problems that wheelchair users and the physically challenged face daily. Access alleviates the amount of limitations and restrictions on wheelchair users. Failing to ensure wheelchair accessibility is neglecting to provide reasonable adjustments. It is like functioning in dysfunction.

    According to the British Government, the British can apply for dropped kerbs. However, I get really annoyed with drivers who park across dropped kerbs. Dropped kerbs are meant to make it easy for wheelchairs to enter and exit sidewalks. The Government needs to clamp down on these drivers with a fine. The same should happen in Bermuda.

    AccessAdvisr helps to monitor wheelchair access. Disabled people going places. AccessAdvisr Board members are Rob Trent and Martyn Sibley.(https://accessadvisr.net)

    The AccessAdvisr website allows disabled people to rate and find first-hand accessibility information. Photographs can also be uploaded alongside reviews. This helps to tackle wheelchair accessibility issues. It also encourages accountability and inclusion.

    So, in ‘Dealing with Disability on the Job’, we must work towards inclusion, equality and diversity in the workplace by creating inclusion in the workplace, and inclusive workplaces. This could possibly help to improve the economy on a global scale. All jobs should be Disability Confident. I think Bermuda should also adopt this scheme to work on a better future for Bermudians.