Judy was our mother, guide and friend (Picture: Getty Images)

As I scrolled down my Instagram newsfeed and saw a flood of tributes to disability activist Judith Heumann, a sudden pang of sadness came over me.

I couldn’t believe the sad news that she’d died aged 75 earlier this month.

Judy was a pioneering activist who led a generation of change with her voice, intelligence and persistence.

From the 504 sit-ins – where she led 80 activists to protest for disability rights by stopping traffic in New York City’s Madison Avenue in 1977 – to her hand in campaigning for the foundation of the Americans with Disabilities Act (ADA), which is a landmark civil rights law in the US.

She often advised governments and leaders, including in the Clinton administration as an assistant secretary in the Office of Special Education and Rehabilitation Services in the Department of Education, as well as a special adviser on International Disability Rights by Barack Obama.

She truly changed the world and inspired others to take part in political action. One of those people she inspired was me. Her tenaciousness helped me and many others believe that we matter and that our voices need to be heard.

I often looked to Judith as a role model more generally for who I could become (Picture: Samantha Renke)

I only became aware of her work five or six years ago, when her name would constantly pop up while I was researching disability culture in my role as a campaigner and activist.

At the time, knowing that there were Judiths in the world made me feel less insignificant as a disabled woman. She – and others like her – gave me a fire in my belly because they validated all the feelings I had inside that said I deserved better and I deserve to be heard.

In 2020, Judy released a memoir (co-authored with Kristen Joiner) titled ‘Being Heumann: An Unrepentant Memoir of a Disability Rights Activist’. The book chronicles her life and work as a disabled person, from her childhood in Brooklyn to her experiences fighting for disability rights on the national and international stage.

This is when I felt as though I really got to know Judy. I had the audio book and would listen to it each morning during my shower. I can even remember having to turn off the water intermittently so as not to miss anything.

It was during this I learned that – like me – she dreamed of being a teacher. In fact, she was initially refused to enter a teaching licence purely because of her disability due to the education board fearing she could not help evacuate students or herself in case of fire.

Through sheer determination, she managed to fulfil this role and became the first wheelchair user to be hired as a teacher in the New York City school system.

I always thought I would one day meet the legend

It reminded me of my own journey. I got my postgraduate certificate of education in 2009 and became a secondary school teacher.

Whenever I would tell people that I was a teacher though, they would either react with shock and bewilderment or assume that I taught very small children because it’d be easier for my disability. Looking back, I was a rarity.

Having this shared experience just like Judith, I often looked to her as a role model more generally for who I could become – a feisty disabled wheelchair user unapologetic about her place in the world and demanding equal rights. Knowing that she fought for her dream of becoming a teacher made me want to be that role model for others who don’t feel represented.

I never met her, but last year, I posted about her life story while celebrating Disability History Month. She ended up liking and commenting on my post – simply replying, ‘thank you so much for featuring me’ – and I felt like a rock star that she had reached out to me.

I could never understand the pity I would often receive from non-disabled people who often saw my life as a tragedy (Picture: Samantha Renke)

So when I saw an outpouring of love for her last week – from disabled influencers on social media all around the world – after the news of her passing, I felt a personal loss.

This person felt like family. In fact, being part of the disability community can at times feel like you have a zillion extended family members.

Sure, we don’t all see eye-to-eye, but that familiarity of life in a disabling world – when sometimes you feel so alone and lost and misunderstood – we turn to one another for guidance and inspiration.

I always thought I would one day meet the legend. Now that chance is lost forever, and it feels unfair somehow. I wanted her to know what she meant to me and how she inspired me to fight for what I believed.

We seemed to share the same fire in our bellies that ignited when we were told by the world that we can’t, shouldn’t or couldn’t do something we wanted to do.

I could never understand the pity I would often receive from non-disabled people who often saw my life as a tragedy because I couldn’t walk. I may never have had physical strength but – like Judy – I had a voice, and this voice was a gobby Lancashire lass who would make herself known no matter where she was or who she was with.

Judy was our mother, guide and friend. The world has lost a hero.

She changed so much, yet there is still so much more to be done. Sometimes my own activism journey can feel fruitless – a constant rollercoaster taking 10 steps forward and then 20 back.

In these moments I turn to Judy and her wise words.

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‘Change never happens at the pace we think it should,’ she wrote in her memoir. ‘It happens over years of people joining together, strategising, sharing, pulling all the levers they can. Gradually, excruciatingly slowly things start to happen and then suddenly, seemingly out of the blue, something will tip!’

Judy taught me more than I could have imagined, even though we never met. Among this is compassion and love – not only for others, but for myself too.

I can only hope that my own activism leaves an ounce of the same impact Judy has left on this world.

Rest in power, Judy.

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I can only hope that my own activism leaves an ounce of the same impact Judy has left on this world.