To celebrate United Nations’ International Day of Persons with Disabilities 2018 I thought it would be lovely to shine a spotlight on some of my own disability advocate idols, if you will! Being a disability rights activist and campaigner myself has not just given me purpose and a very rewarding sense of purpose in that, but it has also brought about connections and lifetime friendships with some pretty incredible individuals who I’d of otherwise never have got the honor to meet and work alongside in the disability community.
It was pretty hard to narrow the selection down to just 6 individuals and I am including parents/carers of disabled children/adults too as I believe that they are as much involved in the overall fight for equality, access and inclusion as disabled people themselves. So without further ado, in no particular order let me share with you my ‘Top 6 Disability Advocate Idols’…
A man of many talents, Dan is the creator of the Department of Ability – the worlds first inclusive comic book featuring superheroes with disabilities, PosAbility Mag columnist, motivational speaker, disability advocate and campaigner, member of ITV’s ‘Diversity and Inclusion Panel,’ to name a few but above all – he’s a doting father to 11-year-old Emily who was born with Spina Bifida.
Dan has this great ability to be so public, outspoken and professional throughout all his work, and yet still remains connected, real and understanding to other parents on the front line, battling the same barriers for their children and to disabled people like me, showing society how we should be treated – equally. It’s something I’d never seen in a parent before, reminding me much of my own Dad if he was born in the right era of empowering disabled people. He along with the other Changing Places campaign forces to be reckoned with, give me this warm, fuzzy feeling inside reminding me how far this country has come in that parents of disabled children now have voices and they are NOT afraid to be heard or fight for a better future for their children. If these are the parents of disabled children of this generation, I fist bump the air to imagine just how mighty of disabled people these little ones are going to be one day!
Mum to 6-year-old Fraser, CEO of the incredible charity and leaders in support and research for Duchenne Muscular Dystrophy – Action Duchenne, Patient Ethics Rep for Genomics England and fierce Disability Rights advocate Shelley is one heck of a woman with one mighty heart, big enough to embrace anybody who’s ever walked a similar path to her – whether that be other parents facing a Duchenne diagnosis or disabled people in general facing the social injustices of access and equality barriers in modern-day Britain. Shelley has your back! Her heart of gold is evident to those that fight the same fight in particular and it’s clear that her selfless character means despite she’s at war for her own sons future, she will always find that bit more strength within to reach out a hand and support someone else in need at the same time. A Warrior Mum through and through.
Famous British disability actress – most remembered from her witty lines in her big break – her ad with Malteasers, PosAbility Mag and Metro UK columnist and now accessible fashion designer. Sam used her big breaks in the media to honor the disability community by using her fame to campaign for countless struggles we face on a daily basis. She’s sat along side Changing Places campaigns on the toilet throne for a #Looathon in London, then went a step further to mention the need for these vital facilities in Paloma Faith’s – Warrior music video! Now she’s a regular on the popular daytime TV show Loose Women, designing accessible handbags and started a whole new campaign movement called #DontWantOurCash – challenging retailers to sort out access in their stores so more disabled shoppers feel like their ‘Purple Pound’ is worthy. There is nothing this woman cannot do and she does it all with such grace, making it appear effortless when living with Osteogenesis Imperfecta (OI), proving to society that the social model of disability is infact very true – it’s not our disabilities that hold us back, it’s our environments.
Famous disabled mouth and foot artist Alison made British history for women with disabilities. Not only was and is she still an incredible artist, but she showed our very stand-offish society that disabled women can and do have children, disabled parents do far more than just “manage” balancing their impairments along side parenting but they excel at it. Long time readers of my blog may recall that Alison Lapper’s very public media coverage of her being disabled and pregnant, having a sculpture made of her pregnant body in the name of art (which was displayed in Trafalgar Square until late 2007) and then going on to have her parenting abilities observed under a spotlight when she and her son Parys were part of the revolutionary BBC documentary series ‘Child Of Our Time’ was my driving force for believing – I too could parent with a disability. I have alot to thank Alison for if I ever get the opportunity to one day, if it wasn’t for her letting cameras so intruding into her life, I may not have had the self-belief that I am a good Mother, disability or not.
Disability rights campaigner, founder of Muscular Dystrophy UK’s Trailblazers division and 1 of the BBC’s 100 Most Inspirational Women 2015 Michaela is not only an idol because she’s highly recognised in the media but because she inspires each and every young woman who has ever joined MDUK’s Trailblazers in the 10+ years they’ve been going now. Michaela proves to us again and again that leading a “normal” life shouldn’t be merely a pipe dream because we’re disabled, that campaigning for better access to things you enjoy and want to enjoy more of IS 100% worth all the blood, sweat and tears you put into it. Personally she unknowingly taught me how to campaign when I never intentionally set out to be a “campaigner” and she’s spurred me on in my aspirations especially in learning to drive a fully accessible vehicle, not only this but she is always there should you need someone to talk to. She’s definitely my go to girl should I need a kick up the bum sometimes!
Motivational speaker and famous YouTuber living with blindness Molly Burke is the type of young woman I hope my eldest daughter Abbie grows up to be like. See Molly and Abbie although generations apart share something in common, they both have Retinitis Pigmentosa – an incurable, degenerative eye condition that leads to progressive vision loss. I came across Molly’s YouTube channel in the early days of Abbie’s diagnosis and from there I was hooked. Through her videos and overall attitude she has taught me inadvertently how best to parent a child with a visual impairment and what the world is like for people with blindness. As a Mum, she grounded me from falling into the pit of despair over my daughters diagnosis and pulled me back to reality, making me realise I could do this and I can use the same mentality I do with my own (yet completely different) disability. Thanks to Molly and her teachings, I am confident in raising my daughter not just to navigate the world with vision loss, but to be proud and aspire to whatever her heart desires. Too much emphasis is based on vision in society, it does not hold a person back. Attitudes do!