Ableism – What is it and what can we do about it?
My name is Rachel Booth-Gardiner. I am an occupational therapist and someone who has lived with disabilities and neurodiversity since birth. I have been tasked with writing a blog about ableism, and I would like to share my personal experiences to bring attention to some important points. Please understand that any criticism of services, or locations is meant to be constructive and help you reflect as you read.
The term "ableism" is not merely a trendy word; its origins lie in the disability rights movement, which has been tirelessly advocating for change since the 1960s and 1970s. Activists and advocates have used the term ableism to shed light on the systemic barriers and societal attitudes that oppress people with disabilities. We can draw parallels with other forms of discrimination, such as racism and sexism, to better understand ableism.
Ableism refers to discrimination, prejudice, or negative attitudes and beliefs toward individuals with disabilities. It involves marginalising people based on their physical, sensory, cognitive, or mental health differences.
While discussions about ableism have been ongoing within advocacy circles for quite some time, it is encouraging to see that the conversation has finally gained momentum in mainstream society. Increased awareness and the growing movement for inclusivity and accessibility have brought ableism into the spotlight. It is now being recognised and explored within healthcare, social education, the media, and online platforms.
Ableism is not just an abstract concept – it manifests itself in countless ways, inflicting harm, and perpetuating exclusion. Below are some examples of how ableism is experienced and carried out, sometimes unintentionally.
Attitudinal Barriers:
People with disabilities are often unjustly stigmatised, labelled as dependent, helpless, or constantly in need of assistance. Such stereotypes not only disregard individual abilities and strengths but also perpetuate demeaning prejudices. Society's tendency to either pity individuals with disabilities or label them as inspirational solely because of their disability is one such form.
Throughout my life, my disability has changed in how it can be observed by others. As a child, I wore orthopaedic shoes and splints. In my young adulthood, I chose not to wear these to appear 'normal.' Now, in my early 40s, after experiencing further health complications, I use a wheelchair at work and outside the home. During times when my disability was invisible or harder to notice, I faced challenges like peers accusing me of lying or receiving special privileges, such as being allowed to wear boots at school. I have also encountered strangers who congratulate me for being out alone in my wheelchair, as well as individuals who have manhandled my chair when I was in their way. Some have even questioned why I use the chair when I can walk short distances with walking aids. I have even been asked why I’m not a Paralympian, my response, I ask them why they are not an Olympian.
Within healthcare settings, when I broke my leg, health professionals did not consider my existing disabilities. They saw me as a typical broken leg case rather than as a person who would find hopping and using crutches on one leg extremely challenging. As a result, I had to fight for access to the equipment that would have helped me as an individual.
The most challenging aspect is the attitudes of those around you – feeling like a burden or feeling like things must be done differently for you to attend events. Years ago, the team I worked with wanted to go to a restaurant that had a private dining area. I had previously been to this restaurant but found the access difficult. On the third occasion, I suggested trying a different place, explaining that I found it challenging to get into and navigate the private dining area. This was met with attitudes of me being difficult, and eventually, a compromise was reached that allowed us to eat in the downstairs area. However, I had to point out that accessing toilets still required climbing a steep staircase. As a result, I dread work social events and often decline them as it is easier.
Architectural and Environmental Barriers:
Inaccessible spaces, physical environments that lack ramps, elevators, or other accommodations create insurmountable barriers for individuals with mobility impairments, effectively excluding them from public life.
Public spaces, events, or services often fail to provide necessary accommodations, such as sign language interpreters, braille materials, accessible technology, spaces, parking, and overnight accommodations. This leaves individuals with disabilities without the support they need.
This is something I struggle with daily. My home is set up to meet my needs, and I don't feel disabled there. Everything is at the right height, and the layout encourages me to walk. However, the moment I leave my home, I become disabled because the environment is not built with me in mind, or people create further barriers. Drop curbs are one of my biggest pet peeves. They are either hard to find, poorly maintained, or often blocked by parked cars, preventing me from reaching my destination. Even going away for one night requires extensive planning. I often must call accommodations to find out what "accessible" room means, as I have too often encountered low toilets, forcing me to use a bathtub to relieve myself or a walk-in shower with nothing to sit on or hold onto.
Social and Institutional Barriers:
Discrimination in employment including bias and discrimination persist in the workplace, hindering the career advancement and professional opportunities of individuals with disabilities. Biased hiring processes, lack of reasonable adjustments, and limited prospects for growth all contribute to this systemic injustice.
Educational institutions continue to be far from inclusive, denying students with disabilities equal access to education and hindering their intellectual and personal growth.
Accessibility to quality healthcare remains an ongoing struggle for people with disabilities. Inadequate facilities and medical equipment create insurmountable barriers, denying this marginalized group the right to proper healthcare.
As a child, I remember being given an envelope while all the other children received a printed letter about going to secondary school. The local authority had made assumptions based on my diagnosis regarding which school I would attend. This was the first time I felt singled out as different, and it has led to a lifetime of having to fight for fair access and constantly prove that I meet the criteria to access the things I need. I have experienced asking for reasonable adjustments during job interviews, such as being able to read questions or receiving them beforehand to help with processing. However, this has been seen as unfair to others. After returning to work as a wheelchair user, I have encountered differing and inconsistent views on the areas of the workplace that I can physically access.
When it comes to health care, often invites and letters to appoints don’t include information about how accessible the venue is, leaving it up to me to research or attend and find I can’t access. I have been refused access to health care, due to perceptions on not meeting criteria that does not focus on my needs.
Media Representation:
The media often perpetuates harmful stereotypes about disabilities, reinforcing negative attitudes and misconceptions. There is a lack of representation within the media that fails to adequately portray people with disabilities, depriving society of diverse perspectives and perpetuating a one-dimensional view of humanity.
In recent years, I have noticed improvements in television soap operas such as Emmerdale, Eastenders, and Coronation Street regarding their portrayal of characters with disabilities. These shows have made efforts to incorporate storylines that go beyond the characters' disabilities and highlight their individual identities. However, it is important to note that these storylines sometimes perpetuate stereotypes about disabilities. They present them in a manner that may not accurately reflect the diverse realities of living with a disability. Additionally, when a character's disability is depicted as life-limiting, the narrative often concludes with the character choosing euthanasia. While this outcome can be a reality for some, it reinforces the notion that disabilities cannot be successfully managed, and that death is a preferable alternative.
Language and Communication:
The casual use of derogatory terms or slurs related to disabilities perpetuates a culture of disrespect and deepens negative stereotypes, further isolating and demeaning individuals with disabilities.
In 2022, Lizzo, a Grammy-winning singer and rapper widely admired for her commitment to inclusivity, made a modification to a lyric in one of her new songs shortly after its release. This adjustment came in response to criticism regarding the use of a word that many consider derogatory towards individuals with disabilities. Originally, in the song "Grrrls", Lizzo used the term "spaz" to express the idea of losing control. However, this term is derived from spastic diplegia, a type of cerebral palsy characterized by motor impairments affecting the arms or legs. After receiving concerns from her fans and disability advocates, Lizzo made the decision to replace what they identified as an ableist slur. This word has historically been recognized as particularly hurtful in some countries, where it has been used to taunt individuals in educational settings.
It is unjust and flawed to assume that individuals with disabilities are always dependent or incapable without considering their unique abilities and strengths. We still have a long way to go before ableist words become socially unacceptable, but it is a great start.
What could you do to address ableism?
Ableism entrenches the oppressive and outdated medical model of disability, which places blame on individuals instead of addressing society's failure to accommodate their diverse needs. Health and social care professions need to consider and embrace the social model of disability, which highlights the need to adapt society to meet the needs of all individuals, regardless of their unique abilities. Recognising that people are the experts of their own experiences and co-creating treatment goals that consider their lived experiences will result in better outcomes.
Other ways we can begin to combat ableism is by truly promoting inclusion. This involves building environments that embrace and celebrate the diversity of abilities. Ensure that physical spaces are accessible and foster an inclusive mindset that values every individual. Additionally, spreading education and awareness is crucial. We must actively raise awareness about ableism and its devastating impact. Lastly, becoming an ally takes work. This involves firstly recognising your own privileges and prejudices, including the unconscious ones. Take the time to understand the advantages this gives you over others and begin acting in a way that seeks equity within policies and practices.
Thankyou for reading.
Rachel Booth-Gardiner Lead Occupational Therapist TEWV NHS Trust
rachel.booth-gardiner@nhs.net