We’ve had the Golden Globes, the BAFTA’s and then the Oscars and while we didn’t know before the ceremonies who the winners would be, one thing we all knew in advance was that there would be celebrities queueing up to make passionate acceptance speeches in support of their favoured ‘causes’.
Recent favourite celebrity social causes include women’s rights, whether that be the #metoo and #timesup movements, gender equality generally, or pro-choice campaigns. LGBTQIA+ community rights are a popular choice for celebrity endorsement, as are racial and ethnic equality causes. Diversity in many forms is well represented by these high-profile celebrity figures, except in one seemingly absent area; disability equality.
Celebrities will queue up to be photographed alongside a ‘cute’ disabled child and will be on-message during television fundraisers to help provide much needed income to disability charities, but stick them on the red carpet or on the stage at an awards ceremony with the whole world watching and disability equality remains the poorest of poor cousins when it comes to celebrity endorsement.
There are a small handful of exceptions, celebrity disability allies and celebrities who have a disability themselves…
US actor Selma Blair, who was diagnosed with Multiple Sclerosis in 2018, commented that “I really feel like people with disabilities are invisible to a lot of people…” to Vanity Fair magazine at an after-show party following the 2019 Oscars; “If I can help anyone be more comfortable in their skin, it’s more than I’ve ever done before.” See more of this story here: https://www.bbc.co.uk/news/entertainment-arts-47390896
Actor, presenter and comedian Sally Phillips is a passionate and articulate disability campaigner, particularly on behalf of people with Down’s Syndrome including her own son, Olly. Her brilliant TV documentary, ‘A World Without Down’s Syndrome’ is very well worth watching, read more about it here: https://www.bbc.co.uk/news/magazine-37500189
Disney Pixar animator, writer, director and producer Bobby Rubio created the wonderful Pixar short film ‘Float’, about a child who is different, in response to his own child Alex who is Autistic. You can read and see more of this story here: https://theadditionalneedsblogfather.com/2019/11/19/float/
However these shining lights, and a few that are willing to speak about mental health, seem to be among a very small number of exceptions to the rule, and the rule tends to be that other areas of discrimination and inequality are more ‘fashionable’ to campaign about than disability. Disabled people and their families watch, seemingly invisible, as a wide range of social causes are vocally promoted and supported by high profile celebrity advocates while they are often overlooked.
So, what can the disability community do to change all of this? To be noticed by those who have the influence, followers and platform to make a real difference and to help bring about positive change? I believe that there are three key things that we need to do if we hope to see future Oscar winners raging at the microphone, campaigning on behalf of disabled people and their families:
1. We need to be a community
All too often, the disability community turns in on itself. Time and time again I’ve seen online conversations, and even ‘real-world’ ones, that have started positively but have rapidly degenerated to stronger and stronger criticism of each other due to perceived (and sometimes real) misunderstandings or misrepresentations of their particular difference, diversity or disability. Winning points about minutiae seems to be more important than the big picture. We need to be better than this, we need to be a community that supports each other, not pulls each other down. We need to pull together.
2. We need to learn from others
The transformation in the perception, acceptance and rights of the LGBTQIA+ community has, to a great degree, been due to the relentless and highly skilled campaigning of organisations like Stonewall. They have been excellent at raising awareness of inequality and abuse and then challenging decision makers, influencers and ultimately the public at large to change their thinking. We could do a lot worse, as the disability community, than to study their approach, as well as that of other similarly successful campaign groups, and learn from them.
3. We need a #metoo moment
Social media has the power to change the hearts and minds of the world overnight. A hashtag or post can go viral and reach many millions of people in hours, being picked up and passed on by influencers and celebrities along the way. What is our #metoo moment? How do we succinctly, passionately and successfully launch a movement for change that has that kind of impact? We need to plan for it, prepare for it, time it right, get it in front of those celebrity advocates that we do know, unite behind it and publicise it for all we’re worth!
We can bring about change, we can make a real difference to the lives of disabled people and their families, but we can’t just sit back and wait for it to happen. We need to be proactive, we need to be professional, and we need to be united. Let’s go transform the world together and get celebrities talking about disability equality and rights for a change; are you with me?
Mark
See also:
Why Children With Additional Needs Are Like Edgar The Dragon
Why Children With Additional Needs Are Like Edgar The Dragon
Image rights: Header © Photo by Matt Botsford on Unsplash; Golden Globes/Oscar © HFPA/AMPAS; Selma Blair © BBC News and Selma Blair; Sally Phillips and Olly © BBC News and Sally Phillips; James Arnold © Mark Arnold.
The Additional Needs Blogfather 
Excellent post and very timely. Disability rights are being continuously eroded, from the womb to the grave and yet the mainstream equality movements seem unaware or uninterested. I’ve got my eyes open for a #metoo moment!
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Spot on!
On Twitter particularly it seems to be a fight to have the worse disability. It’s hard for everyone and we all need to unite – disabled people, their enablers and parents.
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Yes, yes and YES! I don’t think I could love this post any more. Excellent points, and right on!
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Yes, agree wholly!
My thirty three year old son, Louis, is currently detained in a locked learning disability assessment unit. His brain injury gives him equivalent cognitive age of two, but wisdom of lived experience, memories and missing people/places that makes his incarceration feel worse for him .. then again would we lock up a two year old? His bedroom walls are bare, it looks bleaker than a prison cell. At first we transformed the space with his paintings, photos of family, postcards expressing good wishes; we created together a ‘calendar’ of 7 sheets of A4 painted different colours, to help him plan his time.
After a few months, a man from ‘Infection control’ said it broke the Infection control policy of the hospital and it all had to come down.
I asked if the faeces on the ceiling, a body-protest quite understandable in the circumstances posed a greater risk, how could the wall decorations be a risk? There was organisational muttering, some hastily-applied paint, but no relenting.
This decoration, that was a ‘communication tool’, that Louis had co-created and had never damaged, despite other forms of protest, was all torn down. It stopped him being able to communicate with staff.
If only we could get this story to a contemporary artist, Tracy Emin? Rachel Whiteread, contemporary art tutors interested in this field .. any ideas?
I am based in Perthshire, Scotland. There is a current investigation of the low standards in all of NHS Tayside mental health, the health minister visited the enquiry in December and, a former mental-health nurse, was shocked.
There is a culture of using additional psychotropic medication for sedation, though research says this is ineffective; it is used in conjunction with ‘isolation’ or ‘seclusion’ and varying amounts of physical restraint i.e. locking patients into their rooms – from where they are ‘observed’ from the outside.
What is not employed is skilled person-centred care with robust care plans to overcome boredom, to use up physical energy. On of the editors of the Sunday Mail, Ian Birrell … used to work for the Independent … is parent of an autistic son … I loathe the Mail and its general outlook but they do from time to time campaign and were campaigning about similar conditions in LDAUs in England, threatening to take NHS England to the European Court of Human Rights. I wrote to ask if the Scottish Mail on Sunday was planning something similar in Scotland, but never had a reply. ECHR will become a thing of the past. This is something to link in with?
I’ve driven 25,000 miles in the last year, visiting at least five days a week, it’s a 100 mile round-trip, there’s only so much energy.
Lastly, I have thought about – and plan to action – approaching Ken Loach, Mike Leigh, Shane Meadows as film directors – to enquire about them taking on this subject.
My son was profoundly brain-injured as a three day old baby by medical negligence in failing to investigate a high temperature. Meningitis followed. My son’s infection was the second-highest ever recorded world-wide. The doctor had those facts to hand when he insisted on treating. I queried the treatment of a dying baby whose lifelong outcome was so poor. The doctor promised ‘society will always care’. As I always knew, as you all know, Society does NOT care: the prison cell is proof.
My beloved son is a beloved man, he is a gift to me, he is loved by his family and friends. But we heap on him an unbearable load. How can we be so hypocritical as a society? It’s because society doesn’t know enough … many people want to help us, they just don’t know how.
We also need to inspire a generation of young and older people to see the joys and delights in caring, the creativity and intelligence and sensitivity that is required …
not only are there no ‘champions’ out there .. but where are the honours in the honours system for our children, who endure so much in their very lives … who enable people in Britain to feel proud of ‘our culture, our NHS’ … no, the ones who endure the most are wholly invisible!!!
I am up for forming a group to bring these stories to wider attention.
Kate S
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Thank you for sharing yours and your sons story Kate, it is heartbreaking and sadly not the first time I’ve heard stories like this. I wrote a blog a while ago about this very issue called ‘The Institutionalised Torture Of Our Children’ https://theadditionalneedsblogfather.com/2019/06/13/the-institutionalised-torture-of-our-children/ based largely on the investigative work of Rachel Lucas from Sky News.
Rachel is an ally in this area and I’m sure she would be welcoming of contact from you with another similar story as a follow up. My primary contact with Rachel has been through Twitter where you can contact her @RachelSkyNews
It’s just not good enough for our children to be abused in this way, as abused is what it is. I would happily share your story via my blog too with your permission.
It’s a long shot but I’m in Scotland the weekend after next at the ‘Deep Impact’ youth conference in Aviemore. I imagine that’s still a long way from Perth (I live in Bournemouth on the south coast of England!) but if you fancied meeting up there on the Saturday (18th) then I’d be happy to listen to your story and take some more notes, or you could email any more details to me at markjarnold@gmail.com
Thanks again for sharing, Kate, and if nothing else I stand with you.
Mark
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Thank you, Mark. Your solidarity is in itself a support.
Thanks, too, for the suggestion I contact Rachel.
I would be very pleased if you would share Louis’ and my story on your blog.
The bad has to be named so that we can move forward as a community and as families. We are not rooted in reality if we press on with plans for alternatives without stopping and saying ‘this is how things actually are’.
We never know whose life we touch when we share something. I received a letter from a mother of a child called ‘Catherine’ who died of meningitis aged just a few months after I wrote for the Independent about Louis’ story. She said she had never been able to get over Catherine’s death, but reading Louis’ story, she could at last feel glad that Catherine had died peacefully and had not know the troubles visited on Louis.
There is good, too, that needs acknowledging in Louis’ story. There are individual nurses who do try to make relationships. The good comes out, despite the system. It’s a sad situation, with no consultant psychiatrist overseeing the ward, an organisational culture that I suspect makes life hard for staff.
And in a different dimension, I am working to create a small residential community, for Louis plus 2 or 3 others, just off the A9 near Auchterarder. Jean Vanier gave me his blessing, before he died, to name our operating charity ‘The Dany Community’, honouring the third man who started at Troisly, who needed to be taken back to the long-stay mental home in the morning. My Louis is a bit like Dany perhaps, just a bit too difficult for l’Arche or Camphill to manage, because the effect of what has been visited upon Louis has shaped him with tendencies to protest and because his language needs to be learned, so he requires consistency of care, by staff who stay a long while.
I wonder if you have come across the work of Bill Gaventa, who has worked all his life, as an ordained priest in the Baptist church in the US, in the field of learning disabilities and spirituality? I met him at the IASSIDD conference in Glasgow last August, where I was presenting on ‘Profound learning disabilities and Spirituality’. He gave me his book ‘Disability and Spirituality: Recovering Wholeness’, which is a masterpiece, drawing together wisdom, faith, professional reflection, from many different perspectives: the disabled individual’s, the family’s, professionals’, regarding practice and theory of caring with spirituality. John Swinton, Hans Reinders, Trevor Parmentier all endorse it.
(IASSIDD = international association for the scientific study of intellectual and developmental delays)
You suggest meeting up in Aviemore on 18th. It’s a couple of hours away. (Quite close in Perthshire terms!) I would really like that. I’m also thinking that I could build a day out for my husband and me around it – he suffers in all this, he’s an accomplished bird artist who used to travel up to Aviemore as a base for work – http://www.jonathansainsbury.com – what times of your day do you see as suitable opportunity for us to meet?
Thank you for your generous response. Look forward to hearing from you.
Warm wishes
Kate
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Lets hope there is change coming as there are some great advocates now in the public eye like Sam Renke and Adam Pearson.
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