Ableism, Blog Post, Disability, Disability Pride

We are making progress but its not far enough – Lets not celebrate #Beyoncé for agreeing to change her #Ableist lyric.

Acknowledgment – This blog post is a personal opinion piece of experiences, thoughts and ideas about my own lived experience of disability. I acknowledge these will not be shared by all the community, and expect their rights to have different even conflicting ideas. 

Throughout this blog I use the term ‘disability,’ lived experiences of disability’ and or ‘disabled’ by this term I mean anyone that identifies with a physical, mental, learning disability and/or those with long term, and/or life changing health conditions. 

This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessible needs. 

This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

July has just finished and with it Disability Pride month. I’m part of a group of OT’s that founded @AbleOTUK an Occupational Therapy Network/Advocacy Group for Practitioners, Students, Researchers, Educators and People with lived experiences of Disabilities and/or Long Term Health Conditions.

Throughout July we used our twitter & instagram feed along with an article in OT news for others to be our allies.  Each day posting out facts or ways you could #BeAnAbleOTukAlly.  Check out this hashtag to see the daily posts.  

We had mostly positive feedback, but at times some of the words we used and ideas we shared were questioned.  

Some struggled with the word ‘privilege’ Cambridge Online Dictionary has several definitions

Including 

An advantage that only one person or group of people has, usually because of their position or because they are rich:

  • Healthcare should be a right, not a privilege.
  • Senior management enjoy certain privileges, such as company cars and health insurance.

A right or advantage that only a small number of people have:

  • At the moment, it tends to be managers or technology-related workers who work from home – it’s seen as something of a privilege for trusted employees.
  • With power and privilege comes responsibility.
  • Be a privilege doing/to do sth It’s been a pleasure and a privilege to work with you all.
  • Have the privilege of doing sth I had the privilege of studying at one of the country’s leading business schools.
  • For the privilege of doing sth Advertisers often subsidize entire TV productions or movie marketing campaigns for the privilege of featuring their brands.
  • Enjoy/earn a privilege It is possible that the company will one day command a premium rating, but the market clearly believes it has to earn that privilege.

This is something I have been reflecting on a lot

What privilege is? 

What privileges I have?

What impact that has had? 

What privileges others have, that perhaps I don’t?  

At its simplest,  we understand privilege in terms of the rich white male, having more access, opportunities, resources, power and influence over others, and that this position often gives that person in terms of being politically correct, the ability to say and do things that others can not.  

Whatever your political opinions, two examples of recent white men in power come to mind.  Where behaviour that would not be tolerated in the work place. Like inciting people to riot, using racist and sexist terms. Lying to Parliament or breaking government rules of social distancing, are excused or even excepted. 

But the idea of privilege is way more complex than that, there are so many factors that impact the chances you have in life.  I often reflect on my now visible disability (using a wheelchair), being a privilege over when my disability was lest visible,  its the same disability, It just impacts my body differently because of other factors. 

Don’t get me wrong being a wheelchair user has many disadvantages.  Leaving the house is always a challenge, having to plan every trip down to will there be an accessible toilet, car parked at a dropped curb,  to managing the unpredictable behaviours of people you may come across,  some that mean well, but are over helpful, often repeating offers of help even after they have been thanked and told no.  Others that just watch you struggle,  or say things like, ‘should you be out on your own?’ or ‘well done for getting out’.  I have even been patted on the head.  The worst is someone physically getting hold of the chair and trying to move me.  

But when my disability was more hidden, the behaviours were still there, just manifested themselves differently.  From being looked at for using the lift rather than the stairs at work, to agreed reasonable adjustments not being followed through. 

And now I can mobilise on my feet, but prefer to use the chair when outside the home, because, I can go some much further, do some much more and not feel as tired or in pain like I did before.  This choice is questioned,  misunderstood as lazy or even attention seeking when in-fact in terms of optimising my energy to engage in the occupations, I need, want and are required to do makes so much sense.  

OK OK I hear you, what has your ramblings got to do with Beyoncé, well I’m getting to that.  I guess I wanted you the reader to be thinking about privilege in its broadest terms, and have some examples of everyday ableism before I start to dis the idol that is Beyoncé.

The amazing group of women that founded AbleOTUK have become a daily support system,  and our WhatsApp group is a place to share ideas and thoughts for events and projects but also a place we can air our frustrations. 

Today one of the group shared this Guardian article

The article opens with 

Beyoncé has confirmed that she will remove an offensive term for disabled people from the lyrics of her new album, Renaissance, after it was called “ableist” and “offensive” by disability charities and activists.’ 

It goes on to describe a similar incident in June made by singer Lizzo. When Australian writer and disability advocate Hannah Diviney tweeted about the inappropriate use of the word when viral. Resulting in Lizzo apologising and removing the word from her song. 

The term used which is slang for describing a person with cerebral palsy (one of my disabilities) is widely offensive in the UK, however, in the US still appears in more common use.

The story closed with information that The UK disability charity Sense had tweeted their disappointment in Beyoncé used this term, even more so just a few weeks after it already hit the headlines in another artists song.  But later praised the singer for listening to the feedback and agreeing to rerecord the lyric,  it even went on to say “Beyoncé has a history of championing inclusivity,”

Should we join in the praise that someone has listen to feedback and changes something?  Well yes of course,  given the examples of two white men in power above.  Who continue to not listen and not apologise for behaves and use of language that has been harmful.  It’s refreshing to see that others can show a better example and admit their mistakes.

But I was left with one thought, and it relates to privilege. Beyonce I’m sure would be the first to agree she is in a position of great privilege and great power.  I’m no expert but I would imagine when an artist of her caliber releases a new album a-lot of time and resources go in to the marketing of it,  including strategic thinking of the type of messages the album wants to portray.   

When we have privilege, of which we will all have in some way or over others,  its important to recognise this and try to ensure it is used to enhance the experiences of others without that privilege, rather than disadvantage people more.  

The very fact that this word made it on the album, only explicitly shows that the idea of prejudice against those with disability ‘Ableism’, is not yet truly thought of as offensive,  and we still have a long way to go before acceptation and understanding of ablest views, words and options are just as damaging as those consider racist, sexist and homophobic.  

References

https://dictionary.cambridge.org/dictionary/english/privilege

https://www.theguardian.com/commentisfree/2022/aug/01/when-beyonce-dropped-the-same-ableist-slur-as-lizzo-on-her-new-album-my-heart-sank

OT News July 2022 pages 40-42

Ableism, Blog Post, Disability, Disability Pride, Occupational Therapy

#DisabilityPrideMonth – What, When & Why

Acknowledgment – This blog post is a personal opinion piece of experiences, thoughts and ideas about my own disability. I acknowledge these will not all be shared by the community, and expect their rights to have different even conflicting ideas. This website has an accessible feature, that allows different accessible formats by simply clicking on a button labelled ‘Accessibility Menu’ that appears in green on all pages. It will provide you with a number of options to change the appearance to meet your accessible needs. This communication has been written by a dyslexic person. If you have any trouble with the meaning of any of the sentences or words, please do not be afraid to ask for clarification. I’m #MadeByDyslexia – expect creative thinking & creative spelling.

Disability pride started as a one day event but since 2015 the entire month of July has become an annual worldwide event to celebrate disability and the diversity of the community. July was selected as this was the month The Americans with Disabilities Act (ADA) was founded on July 26, 1990. 

Why Pride?

The word ‘Pride’ is used in many equality movements, the word means;

  • a high or inordinate opinion of one’s own dignity, importance, merit, or superiority, whether as cherished in the mind or as displayed in bearing, conduct, etc.
  • the state or feeling of being proud
  • a becoming or dignified sense of what is due to oneself or one’s position or character; self-respect; self-esteem
  • pleasure or satisfaction taken in something done by or belonging to oneself or believed to reflect credit upon oneself: 
  • celebration of a specific minority group and affirmation of equal rights for members of that community:

Disability Pride – aim’s to shine a light on physical, learning, hidden disabilities and mental health conditions, by enabling open conversations about disability, encouraging people to, sharing experiences, raising awareness and challenging barriers whilst celebrating the diversity, a pride with the community.

In 2017 Ann Magill designed a disability pride month flag, which she later updated in Oct 2021, she has waved her rights to copyright and it has now been adopted by the movement.

It has a  black background that represents the colour of mourning for those who have suffered from ableist violence, rebellion and protest. The 5 colours represent the variety of needs and experiences.  Read more about the Flag on Ann’s website

During July the @AbleOTUK team of which I am a member will be using their social media platforms, to promote the month, and encourage you to be an ally to those people with disabilities and/or long term health conditions.

Regular reader’s of my blog will know I have a number of disabilities, some from birth and others I have developed. If I had just one thing for you the reader to take away from this blog its this. Disability and a persons relationship with their disability is very complex. It can take a lifetime to really understand its impact, and its impact is often rewarding. Seeing the world through a disability is a gift you should be envious of. It has taught me some much, shaped my thinking, my relationships and life goals.

But it’s those without this experience that have shaped the narrative. Resulting in offers of help, out of sympathy, or even guilt. Often that help comes with expectations, criteria, that keeps the power and you are expected to be grateful. Disability pride month is so needed, to educate and enlighten others. It is not something to be feared, not something that can be ignored and not something that can and should be fixed or cured.

The likelihood is that if you live a long life, at some point you will develop a health condition and/or disability. The world needs to put accessibility at the top of its agenda, hand in hand with sustainability. Considering and making your space, platform, program, film, TV show, new invention, book, restaurant, experience, What ever it is, truly assessible will only improved everyones experience.

So during July educate yourself, you will have ideas, thoughts, values shaped by your own experiences that are ableist – Take some time to challenge those. If you like share them in the comments section or on social media.

Rachel

Ableism, Blog Post, Disability, Disability Pride, Personal Life

How a random survey phone call, helped me un-muddle my thoughts and conclude. – Health and Social Care Services are not patient focused and occupational therapy is compliant with this. 

Acknowledgement this blog is a personal opinion piece based on my own experiences of a life living with a Disability, from birth. My personal thoughts about the profession I work in and the almost 2 year journey I have been through in recovering from COVID-19 and the devastating affects it has had on both my body and my thinking. This is no way to criticism of any individuals who have helped me along the way it is an overall observation of the system.  I recognise that the themes and experiences talked about here do not necessary represent the thoughts and experiences of others. 

Thursday 2nd February 2022, around 10.15am, I was still in bed, working on my laptop, uploading some clothes I was selling on eBay.  My mum had not long arrived to help me get to Hydro, she was in the living room when the phone rang. 

I answered my phone, to hear a polite female voice, she began explaining the reasons for the call, a survey about television and radio – what access I had and how important it is to me.  I’m finding that I am craving conversation, maybe because I rely on others to help me leave the house, so any social interaction, feels exciting. Something I need to reflect a-little more on I think.  

So of course I said yes I’ll answer your questions, they were fairly straight forward with an emphasis on how reliant I was and how meaningful television and radio is to me and how I accessed it.  Of course I referred to watching television as a meaningful occupation. (Eyes roll she’s such a geek) 

As the survey came to an end there was a few questions about my education level, area of work and so on.   When I said I was an occupational therapist, the lady  enthusiastically said ‘oh I love occupational therapists’.  I used to work within rehabilitation and worked with lots of OT’s they are amazing.  

We chatted some more and I disclosed my journey of recovery and that I’m beginning to think about going back to work as a wheelchair user.  We finished the last few questions and as we were ending the conversation she said,  I don’t normally do this but I wonder if you have heard of my husband?  

She told me is name, it was not a name I was familiar with,  she explained he was a wheelchair-user after an accident,  but went on to become a Professor and was responsible for developing ‘The social model of disability’.  ‘Oh well of course I know the social model’ I said.  We chatted a little more and ended the conversations with pleasantry’s.

My mind was blown. A quick google later and yes it was confirmed Mike Oliver, who passed away in 2019 was married twice.  First in 1972 to Judith Hunt, (desperately trying to remember did she say Judith yes I think it was Judith)  This guardian obituary gives you an over view of Mikes life and his impact on the disability movement.  https://www.theguardian.com/society/2019/mar/19/mike-oliver-obituary

I began to wonder why don’t I know his name, the model I know well, but not the history behind it. This started a few hours of going down the internet rabbit hole,  clicking on links I found, reading and learning more.  Better than my usual internet rabbit holes, which normally consist of looking at videos of cats or ear-wax being removed. 

Mike was an activist and one we really should know about. He was very critical of the Disability discrimination act, and of many disability charities, as this article on the UK Disability History Month website explains . 

He referred to the phrase parasite people”, once used by the disabled activist Paul Hunt to describe those who furthered their own careers on the backs of the struggles of disabled people to lead ordinary lives”.

This struck me, in regards to lots of things I have been contemplating recently.   

My interaction with health and care professionals, and they’re hopes, aspirations and expectations of my recovery. 

All the thoughts about returning to work as a wheelchair user, and what that might look like. 

My reflection on the difference life before covid 19, and the limitations to an extent my hidden disabilities had on my quality of life, compared to having a very visual disability now with a compelling story of covid 19 and a long hospital admission that grabs peoples attention and in turn often their sympathy.  

Thinking about the things I hid before, the things I felt before, and a desperate feeling of wanting to be free, now and then but for very different reasons.  

My dismay and disappointment in criteria, diagnostic lead services and systems that does not see me as a whole person but as individual health issues/conditions that needed to be fixed.  That are often assessed, reviewed, treated separately.

Still this idea that I need to be cured. Rather that being asked what I want and what I’m comfortable with, with some questions about what was I like before, but not feeling like anyone actually listened. No-one taking the time to have an overview. 

Thoughts about being approached to talk about my experiences at events. Its really nice and has help give me a focus. I want people to hear this story in the hope they will learn something.  Yet when I think about going back to a profession I have invested most of my life to, I keep on being reminded of all those barriers that impacted on the delivery of an occupation focused occupational therapy service, that I wanted to, finding instead I had to please others, and ensure we were seen to be doing thing with people, rather than delivering the interventions they needed. 

Barriers very well documented,  including the miss understanding of what it is we do, a profession that claims to be patient focused, but continues to work within systems that are not, and the professions compliance with this. 

My reading about wheelchair provision legislation is a good example. As a profession we should be looking at what are the occupations our clients, wants, needs and are required to do?  but the criteria within this legislation does not take that in to account, instead it focuses on what your needs are within the environment of your own home, and this alone. Because of my existing disabilities and to save my energy I needed an electric chair.  to really have freedom outside of the house, Thankfully I’m in a privilege position to have family members who could both advise and afford to purchase one privately.   

As occupational therapists, and because of the social model of disability we know it’s the environment we are in, that as the biggest impact on individuals  managing their own needs and wants. It impacts on how we feel, and the choices we make.  Your home environment is a space you spend a lot of time in. You become skilled at managing that environment and change it to meet your needs. But it’s when you’re outside of that environment, when things are out of your control that we become dis able to do the things we want, need and are required to do.  I am including not just the physical environments here, the sensory environments we are in equally impacts, but the solution to manage this is often to create separate spaces.   

How do we firstly honour Mike and his work?

There are those that argue the social model is an outdated ideology,  this paper concludes 

‘the British social model has been an excellent basis for a political movement, but is now an inadequate grounding for a social theory. This social model was a modernist project, built on Marxist foundations. The world, and social theory, has passed it by, and we need to learn from other social movements, and from new theoretical perspectives, particularly those of post-structuralism and post- modernism. We believe that the claim that everyone is impaired, not just disabled people, is a far-reaching and important insight into human experience, with major implications for medical and social intervention in the twenty-first century.’ 

The social model of disability: an outdated ideology? The Journal Research in Social Science and DisabilityVolume 2, pp. 9-28 (2002). Authors Tom Shakespeare, Department of Sociology, University of Newcastle.Nicholas Watson, Department of Nursing Studies, University of Edinburgh.

https://www.um.es/discatif/PROYECTO_DISCATIF/Textos_discapacidad/00_Shakespeare2.pdf Accessed 6th February 2022. 

For me the social model has done so much and it was very right for its time, and still holds clear ideas and theory I truly believe in.  Public spaces now by law need to comply to legislation around access, which would not be the case without it, however I do acknowledge that there is still some way to go. 

The Idea that perhaps we all have strengths and barriers, made up by a number of factors.  By understanding and acknowledging our own and those around us and by promoting understanding and tolerance (if that’s the right word) of each others.  May lead to a better experience for us all . This has been explored within leadership programs I have engaged in.  Acknowledging  psychological therapies about personality traits .  Further thinking about the environment, technologies and terms we use, that may have an impact on our thoughts, and experiences.

It’s attitudes that are the next challenge.  Attitudes within society as a whole, but also within health and social care professions and settings.  Having to do something to accommodate someone else, sounds simple but in reality it is challenging for everyone.

Take simply being asked to wearing a mask in public. 

I struggle a-lot with guilt, and how my activism may come across, I often apologise for myself,  the idea of “parasite people”, sits uncomfortably with me. In away has my lived experiences and the platform I have a privilege? 

Am I furthering my own career on the backs of the struggles of disabled people? I need to make a living, I’m accustom  to a wage that enables me to live comfortably.  At times I feel I am letting too much of me be public –  I’m not sure I want to share all aspects of my life.  

Stories are what history remembers.  History shows that those who stood up, fought against something when those in power were opposed or didn’t seem to care.   We admire them, write about them, make statues of them. Yet still we continue to only listen when the fight gets real, people lose their lives, their jobs, they’re freedom. 

Has health and social care loss its focus?  The profession of nursing, became an aspirational career after Florence Nightingale understood and showed the world that cleanliness save lives, and that nursing was about keeping things clean, keeping people fed, washed, but that is now not seem as a valuable role. Instead cleaning is thought to be a low waged job, and nurses, do paper work, answer the phone, administer medication.  Are left holding the fort when all others go home.

What has happened to my own profession. It is watered down, with stereotypes of expectations.  Within mental health setting the notion that boredom needs to be tackled with entertainment, and that this the role of the Occupational Therapist.   This is not the case in a physical hospital, through-out my 13 months despite not being able to leave my own bed, no body worried about how bored I might be, I had to find ways to entertain myself,  and often at my own expense.

The profession needs to wise up, get back to its roots, review the social model and begin to implement it, whist having an understanding of its critics. 

I recently wrote a blog after the Royal College of Occupational Therapist released their new brand this included new ethics, ethics that I was intrigued by and felt held the values that I hold.  What also changed was the logo and the loss of a symbol, that again in todays modern understanding of disability rights could be argued as no longer representative. Yet the removal caused so much passion people questioned why the symbol had gone, unable to move on.

If only we were that passionate about ensuring that the profession of occupational therapy is both understood and practiced without compromise,  if only we were that passionate about fighting and talking and campaigning to our leaders. Of the power of true occupational therapy and if we could break through the constraints of still a dominative medical model we could really start to make change, Really start to see services that met the needs of the people rather than the needs of the professionals that work in it.  Of course this can not be done alone. We must make a noise, take the time to understand and engage meaningfully with those who have the power to make real changes.

Where I’m I to go next? The future is unclear, I’m open to new opportunities challenges, how that fits with managing this within the new reality, is yet to be discovered. 

Rachel Booth-Gardiner