Hi my lovelies, welcome to Disability Allyship.
This newsletter is about all things disability allyship, to give you a fresh perspective and advice that you can implement immediately to make your world more inclusive of disabled people.
#Thought - The problem(s) with BBC’s Children in Need.
(Image from BBC Children in Need)
[ID: A yellow teddy bear with a multicoloured poker dot bandage across half its face, is sitting to the left smiling. Next to the teddy is the text, in black, BBC Children in Need.]
When I first moved to the UK, I used to enjoy settling down to watch BBC’s Children in Need (CiN) fundraising event. The drama, the stories, the heartfelt tears and temptation to throw money at charities that desperately needed it. And I did throw money at CiN, money that, on reflection, was only going to help part of the problem part of the time, for a small minority of disabled and ill individuals.
This is the complex secret of BBC CiN - it is extremely limited in what it can do for a population that needs a heck of a lot more support than it is being given.
The needs that the disability community have are far reaching and complex. And they certainly can’t be fixed with a once a year, televised charity event. So how far does BBC CiN go and what are the issues that it doesn’t address or that it creates?
We can’t deny that CiN does do good. The money it raises does go to support some amazing projects and charities, but the issue is that it only supports some charities or events for some of the time. Once the funding is gone, the support goes too.
There is a need for CiN because the Government falls short on providing support for disabled people. The point is, CiN shouldn’t have to exist as the Government should be doing more than enough to support disabled people, from childhood to old age.
CiN may appear to centre disabled and ill children in its storytelling and purpose, but it only appears to do so at the expense of the privacy and dignity of these children. Events like CiN perpetuate this idea that disabled and ill people’s medical lives and histories are open to anyone’s curiosity. Disabled people do not owe anyone an explanation about their disability and/or illnesses.
Remember in my last newsletter I introduced you to a the concept of “inspiration porn”? CiN is essentially this on steroids. The stories are being used to tug at your heartstrings, to make you feel sorry for or pity for the children and families and potentially donate money to alleviate this feeling that you have. This is reductive and disrespectful of that child’s lived experience with their illness or disability, and…
…what happens once those cute disabled and/or ill children reach adulthood? There are already many issues for disabled adults around continuing access to medical support and care once they reach adulthood. As a child I used to be booked in to see my orthopaedic doctor at least once a year, if not more, and I would see my occupational therapist multiple times in a year. As an adult I rarely see or hear from my orthopaedic specialist or occupational therapist - unless I specifically request it. And even then an appointment could be denied or delayed if it is not an emergency. This experience is not unique to me.
Lastly, and perhaps the most important issue of all regarding CiN, is that it perpetually harms the disability community by continuing the cycle of ableism (including internalised ableism - more on this next newsletter). Disabled people see these stories and images of pity and tragedy and we start to believe that that is our life, that we are not worth more than being a charitable cause. The point is that we are worth more, we are worth the same chances in life and opportunities as non-disabled people. CiN won’t create this equitable society that we need to thrive. System and structural change will, more solid, ongoing, and fit for purpose support from governments will. More authentic and realistic representation across the media will. More physical and digital access created at the point of design will.
If you have donated money this year to CiN, thank you, I see and recognise that you are trying. And your money will support disabled and ill children for awhile, but just keep in mind that CiN is a temporary fix, a bandaid if you will, on a deeper and more complex issue in society. So instead of thinking that the work is done, now that you have donated to CiN, consider how you can continue to fight for the rights of disabled people, today, tomorrow, and into the new year. Why not comment and let us know how you intend to keep supporting disabled children AND adults to have access, inclusion, and opportunity…
#Action - Are your online meetings accessible?
[ID: An aerial view of three people, all wearing jeans and one a grey shirt, one a fluffy cream jumper and the other a green shirt, are sitting on a couch. There are all pointing at a laptop screen, the laptop is sitting on a brown wood table in front of them.]
Whether it be for work or socialising, many of us have become adept at all the different meeting platforms out there - Zoom, Google Meet, Microsoft Teams, etc. due to the pandemic. I know I certainly have. What many people don’t realise or understand is that a lot of these platforms can be inaccessible to a lot of disabled people for a variety of reasons. Here are a few tips to help you make your meetings more accessible -
Ask about accessibility needs before a meeting or online event. Whenever I set up a meeting with someone new or plan for an event, I ask if that person or if any people in the audience will have any access needs for the zoom/google meet/microsoft teams. More often than not I get a “nope, I don’t have any access needs,” but it is always worth asking just in case.
Give people the option during a meeting or event to keep their camera off. Fatigue and illness are very real experiences for many disabled people, and whilst they may have to attend the meeting or really want to be there at an event, it might be more comfortable for them to attend from bed or laying on the couch or floor. Having their camera off means they can relax and not feel self conscious about their fatigue/headaches/nausea.
If you are doing a presentation, describe yourself when you introduce yourself, i.e., “I am a white woman with shoulder length brown hair and brown eyes. I am wearing a gold sparkly jumper and bright yellow clay stud earrings.” (That is actually what I look like as I am writing this to you!). Also describe any images or text that you might have on a powerpoint presentation, i.e., “This photo is of the 1996 Australian Paralympic swim team at our training pool in Atlanta. It was our silly photo, where we are all pulling faces and leaning in different directions and laughing.” This means that if there are any blind or visually impaired people in your audience they can see what you and the images that you are using.
Last tip, if you have someone who is deaf or hard of hearing, consider what will be the best option for them. This may mean looking into hiring a sign language interpreter for the event, or ensuring that the platform you are using has closed captions and/or subtitling available, and also seeing what apps out there can create transcriptions of your talk (I am exploring the transcript option right now, I will let you know which one my client goes for and how successful it is in the end).
#Thought - Tired of Being Seen.
[ID: A black and white photo of a woman with blonde hair, wearing a black top and silver bracelets and necklaces, is holding up a piece of paper in front of her face. Drawn on the paper is a face winking.]
My mum told me a story once, about when I was only a few months old and she took me to the shops. She was pushing me around in my pram when she was approached by a woman carrying a charity bucket. The woman launched into her spiel about the charity - “We are raising money for disabled children, the poor little things, they need all the help that they can get.”
The woman was quite persistent and so mum relented and agreed to donate some money. As she was going through her bag to find her purse, the woman reached down into the pram to have a look at me. Apparently she said, “what a beautiful baby you have.” Mum then heard a gasp, and as she turned to see what the matter was, the woman, now red in the face, was turning tail and taking off. Mum called after her, “don’t you want the money for the charity.” The woman didn’t stop running and mum never saw her again.
I can’t help but be seen, even if I don’t want to be. And to be seen, to be so constantly on display and judged, is frankly, exhausting.
There is a big problem in the disability community and it revolves around the concept of ‘being seen.’ There are many many layers to this issue, and I can only speak to my experience of it, that of being visibly different. Ever since the moment I was born, ever since that moment with the charity woman, I have been seen in a very public way.
Stares, gasps, double-takes, laughter, refusal to touch my hand or arm, shifting away, unwanted touching and words (I have been blessed and prayed over to many times to count), tears, embarrassment, obtrusive questions and statements about my body… I could go on, but I won’t, I imagine you get the picture. All of these moments, some only lasting seconds, are micro aggressions that stick firmly in my mind. Each one tells me that I am seen as other, and whilst this provides me with certain accommodations without suspicion (think disabled parking, or accessible seating at concerts), it does place me under such intense scrutiny that is so damn tiring. Why? Because I have to fight back against these responses. I have to try and upend beliefs about myself that people hold; imagine having to tell people constantly that you can do this yourself, that you will ask for help if you need it, that what you are doing isn’t inspirational, that you can do more than they can imagine, that limb difference doesn’t mean you are incapable, but it also doesn’t mean you are capable of everything, that at the end of the day you am just like everyone else, just with missing limbs.
The surprising thing is that being so seen provides me with a certain level of privilege that many other disabled people don’t have. I don’t have to prove my disabled status to people because they see it the moment that they meet me. For disabled people with invisible impairments and conditions it is another story. It is a story about being unseen. And in being unseen they often have to fight even harder than us visibly disabled people to get the support and care that they need.
Ultimately ‘being seen’ comes down to one thing - being believed. To have our own experiences of our bodies recognised as the true authority on the lived experience of disability, without being told we are not disabled enough or too disabled, that we do or don’t need support, that we can or can’t do something, based on an assumption. Being seen or not being seen is a burden that we disabled people could do without… and one very small way that you could support the disabled community with this is to promote the voices of disabled activists, advocates and creatives…to see us as we wish to be seen. Share with us in the comments, do you follow any disabled activists, advocates and/or creatives on social media? What have you learnt from them and why should people follow them?
#News - New Zealand’s Ministry for Disabled People.
[ID: a close up of the back of a person at a protest. They are holding up a sign that say “We demand justice plus change.”]
When I read that New Zealand (NZ) have created a Ministry for Disabled People and Accessibility Law I felt two things - a swelling of pride in my chest that NZ was taking the global lead, yet again, on a point of equality (NZ was the first country in the world to give women the right to vote in elections), and I felt frustrated that having a Ministry for Disabled People and Accessibility Law isn’t a common practice in all countries.
What is so brilliant about NZ taking this huge step forward in recognising disabled people as part of the community is that it will positively impact legislation around accessibility and inclusion. In fact, access is one of the main focuses of the role.
Minister for Disability Issues, Carmel Sepuloni, states, “The current disability system is broken and puts too many barriers in place for disabled people and whānau. This is why we are establishing a new Ministry for Disabled People as the heart of this change.”
This is a recognition of the fullness of life for disabled people. Our lives are always impacted by our impairments and conditions, but our lives are not defined by them. Our lives are full, beyond the medical model of disability, beyond the pity, beyond the struggles. By creating a Ministry for Disabled People, NZ is declaring that disability rights are important, and that disabled lives are valuable and worthy.
Please feel free to comment, let’s keep the conversation going. And please feel free to share on your socials, through email, etc. Also, do let me know if there is anything in particular you would like me to discuss or look at, am always happy for suggestions.
Why not follow me on Twitter, Instagram, Linkedin (I’m not on Tik Tok yet, frankly that platform scares the pants off me). Also, if you would like to book a speaker or consultant on all things disability, ableism, inclusion, accessibility, etc, pop me a line here - firstname.lastname@example.org