General news13th June 2025
Samir El-Ziftawy lived a remarkable life and left a legacy.
He was a passionate self-advocate and an influential member of Campaign 4 Change.
His loss in September 2024 was a huge loss to those who knew him and loved him, from his family to his support team.
But his impact remains with us – without him, advocacy, inclusion, and the rights of people with profound and multiple learning disabilities (PMLD) would be a lot different.
Raising awareness for people with profound and multiple learning disabilities
Samir’s voice raised awareness where it mattered, instrumental in advancing the needs and rights of people with profound multiple learning disabilities.
He focused on ensuring greater visibility in society, influencing government policy, and driving deeply felt change in the learning disability sector.
Samir’s story rose to a national level in 2020 at the Learning Disability England (LDE) National Conference, where he presented Making a Profound Difference alongside his Campaign 4 Change colleagues.
It was a powerful session that championed the rights of people with Profound Multiple Learning Disabilities to be seen, heard, and included.
Before taking to that stage, Samir’s work as a self-advocate was locally focused:
- pushing for better accessibility
- increasing the number of Changing Places toilets
- and improving the visibility of PMLD issues within Achieve Together, the social care provider supporting him.
Instrumental in transforming self-advocacy
Samir and his close friend Frankie Dunne changed the dynamic of Campaign 4 Change (whose original membership was made up of members with mid-learning disabilities). Their presence made sure that the rights and voices of people with profound and multiple learning disabilities were always at the forefront of discussions.
Not only did great friendships flourish within the group, but a powerful platform for advocacy at both local and national levels also thrived.
The fruits of their hard work continues to this day. In early 2025, Campaign 4 Change and LDE representative Mary Woodall challenged Minister of State for Care, Stephen Kinnock, to make sure that people with PMLD were included in Baroness Casey’s Commission on Adult Social Care Reform.
It needn’t be said that Samir’s influence continues to shape national discussions on inclusion and social care reform.
Achieving inclusion through action
Samir also believed passionately in action.
He played a pivotal role in organising an athletics championship for people with learning disabilities in the London borough of Sutton in 2018.
A huge success, with Samir providing essential input on the sensory wheelchair races, he was invited to afternoon tea with the Lord Mayor of Sutton, along with a proud sister and nephew.
Samir also threw his passion into supporting Stay Up Late, presenting at their unOrdinary Conference along with speaking at national webinars hosted by PMLD Link and LDE.
Action was taken too for charity work, with Samir, during the pandemic (and as restrictions lifted), taking part in a sponsored walk for breast cancer charities.
Samir’s action was also rewarded when, in 2019, he and fellow Campaign 4 Change campaigners won a Learning Disability and Autism Leaders List Award for work in promoting Changing Places toilets.
‘Making the invisible visible’
Samir’s truly memorable contribution was his involvement in the #MindYourLanguage campaign, which challenged disrespectful and outdated language in social care and beyond.
He also supported PMLD Link’s Removing the Cloak of Invisibility webinar in 2023, where he was literally hidden under an invisibility cloak – only to have it lifted to symbolise the visibility and inclusion of people with profound multiple learning disabilities.
Samir was frequently featured in the PMLD Link journal, serving as an inspiration and role model.
His contributions also extended to academic and professional development. Erren Wheatland (Head of Health & Clinical Governance) and Katie Easton (Healthcare Facilitator) highlighted his advocacy in the Supporting People with Profound and Multiple Learning Disabilities Self-Study Guide (Pavilion Publishing, 2019).
Leaving a lasting legacy
Although it’s heartbreaking to consider that Samir may no longer be with us, his impact is.
He lived every day being a true force for change, proving that even without speech, he could be seen, heard and understood.
Ask anyone who knew him or followed his life’s work, and they will say he left us with inclusion, determination, and an unwavering belief in the rights of all people with profound and multiple learning disabilities.
As is remembered here, his work is certainly not over. The movement he helped create and build continues, meaning that every person with profound, multiple learning disabilities is valued, respected, and included.
Samir – forever an advocate, forever an inspiration, forever with us.
