Kelly Gordon's Powerful Message: 'I Wouldn't Trade My Disability'
In a heartfelt and empowering declaration, a mother-of-two living with Spinal Muscular Atrophy (SMA) has stated she "wouldn't trade my disability," aiming to demonstrate that individuals with disabilities can lead full, meaningful, and successful lives. Her powerful message comes as the condition recently gained significant public attention following former Little Mix star Jesy Nelson's revelation that her twin daughters were diagnosed with SMA.
Living with SMA Type 3: A Personal Journey
Kelly Gordon, 36, received her diagnosis of SMA Type 3 – a less severe yet life-altering form of the condition – at the tender age of two. She maintained the ability to walk independently until she was 11, at which point she transitioned to using a full-time power chair. Reflecting on her unique experience, Ms Gordon explained she "wouldn't change that journey, because it's given me so much strength and understanding of myself and other people."
SMA Type 3, like other forms of the condition, is characterised by progressive muscle weakness and mobility challenges. However, individuals with this specific type often maintain their independence for longer periods than those diagnosed with Type 1 or 2, which tend to be more severe in their progression and impact.
A Mainstream Life with Adaptive Challenges
Ms Gordon, who is based in the West Midlands, has experienced what she describes as a "mainstream life," attending regular schools and enjoying childhood play with friends. She often needed to creatively adapt playground games she wanted to participate in, but as a child, she struggled to accept the progressive nature of her condition.
"But the fact is, you're a child working against a progressive condition, and actually, I wouldn't change that journey, because it's given me so much strength and understanding of myself and other people," she told PA Real Life. "I'm very, very grateful for that, which sounds like a very strange thing to say, but it's true. I can't even imagine what person I would be if I didn't have a disability."
Family History and Daily Management
Ms Gordon's family had no known history of SMA, and she was only tested for the condition because her younger brother, who is 18 months her junior, was not meeting his expected developmental milestones at six months old. Both Kelly and her brother were subsequently diagnosed with SMA Type 3.
Neither of her sons, now aged five and eight, have SMA, but they will be carriers of the genetic condition. For Ms Gordon, SMA primarily affects her standing and walking abilities, and she experiences weaker arms and limited hand dexterity. She can stand with assistance from her husband and typically uses a hoist to transfer to and from her power chair.
"It just kind of depends on the day, and it depends how much energy you've got, how much you've used your body as well," she explained. "I find with myself, because I'm busy, I'm always working, I'm always travelling, my body can, after a few days, sort of feel the impact of that and then get quite fatigued."
Building a Disability-Focused Production Company
Ms Gordon's successful career certainly keeps her active and engaged. She runs her own production company, With Not For, which exclusively represents disabled talent and collaborates with advertising agencies and mainstream media enterprises across the United Kingdom.
"Everybody on our books, whether they're off-screen creatives or on-screen talent, in terms of models, actors, whatever – everybody has a disability," she said. "Even with our internal team, we make sure that everybody is disabled, because we bring that unique perspective."
Kelly and her business partner Emma Gardner established With Not For during the Covid-19 pandemic, having met online and connected over a shared desire to bring more disabled people into creative spaces. Since the company's founding in 2020, they've worked with prominent organisations including Channel 4, Guinness, the Six Nations rugby tournament, and major advertising agencies.
Challenging Disability Narratives in Media
"Our main goal is to change the way disabled people are viewed within the media," she emphasised, adding that she wants to tackle the pervasive narrative that disabled people aren't successful or that they experience a lesser quality of life. "Because ultimately, that's not true. We're often let down by society, and that's a real shame, because things aren't accessible to us, even attitudes aren't accessible sometimes. But me and my business, we're really trying to change that."
Kelly observes how the narrative around disability, particularly in mainstream media, tends to occupy two extreme positions. "One end of the scale is like, it's really sad to be disabled. You stay at home all the time. You just go to medical appointments," she described. "And then the other side is you're a Paralympian, you're so successful, you're inspirational, blah, blah, blah. There's nothing in between."
Responding to Jesy Nelson's Twins Diagnosis
Following the news about Jesy Nelson's twins being diagnosed with SMA, Ms Gordon wants to show the world that having a disability doesn't have to mean living a restricted or limited life. She acknowledges that Jesy's daughters have Type 1 SMA, which is generally more severe than her own Type 3, but she wants to "bring a greater understanding to the world that disability isn't sad."
"Being a person, no matter if you're disabled or not, is an incredibly beautiful and amazing experience, and it doesn't mean that Jesy's going to love her children any less," she affirmed. "It doesn't mean that her children are going to be any less incredible or successful or interesting or funny."
Through her personal journey and professional work, Kelly Gordon continues to challenge stereotypes and demonstrate that disability can coexist with achievement, fulfillment, and a rich, meaningful existence.
