Daydreams that reach around the world: Tackling isolation at the PMLD Conference IV

Have you ever been reading something and thought, “It would be so much easier just to talk to this person and ask them questions”? That was me at the start of my PhD a couple of years ago. Only I had the advantage of knowing the email addresses of some of those people. So I drafted an email asking them to talk, and as I drafted it, other people came to mind who I thought would be interesting. I cc’d everyone in, hit send and tried to re-focus on my reading.

I was reading about people with profound intellectual and multiple disabilities (in the UK profound and multiple learning disabilities—PMLD). Those of you who follow me online will know my work at The Sensory Projects and know I’ve had people with profound disabilities at the forefront of my mind for coming up on two decades now. The PhD is just my most recent adventure. Through my other adventures at The Sensory Projects, and through my private life, which has involved fostering people with complex needs and includes friends with profound disabilities, I have come to understand how isolated this community is.

People with PMLD are missing from the conversation

People with profound intellectual and multiple disabilities are often thought of last in conversations around disability, or quite simply not considered at all. They are excluded from research and marginalised from provision in general. They’re made vulnerable not just because of the complexity of the impairments they live with, but through society’s lack of understanding of their lives. Likewise, the people close to them are also isolated.

Most people begin parenthood alongside friends they’ve known for a while, who are at similar stages in life. Their children will play alongside their own children. If your child has congenital or acquired complex disabilities, it’s likely many of those friends fall away, unable to relate to your situation. They may still invite you to things, but you cannot go and they don’t understand what it takes for you to leave the house with your child. Similarly, the professionals who support these people often find themselves isolated.

To my amazement, people answered my email positively, offering to record chats that focused on people with profound intellectual and multiple disabilities. I realised I wasn’t the only one who would want to hear what they had to say, so I set up a private Facebook group, called it an online conference and uploaded their recordings to the group. I sold tickets for a nominal fee to ensure the people attending really wanted to attend and hadn’t turned up just to press their noses against the glass.

The first conference and its impact

The event was amazing. The presenters, all nervous about what people might think of them, were overwhelmed by the gratitude of the people watching. Everyone expressed how useful the information had been, or how good it was to hear someone who understood their child, or the population of people that they worked with. I watched as people commented on the presentations and made friends with other commenters with whom they had so much in common. At the end of the event, I was able to use the ticket money to make a donation to PMLD Link and to fund trauma treatment for someone in need.

The event had an impact in three ways:

  1. It brought an isolated community together, letting them know they were not alone.
  2. It shared insight and information that people used to make the lives of people with profound disabilities better.
  3. The money raised went to charities that support people with profound intellectual and multiple disabilities.

And now fourth conference - book now for January 14th

As it ended, people asked me when the next one would be! I hadn’t really imagined this one, let alone the next one! So it’s wonderful to be writing today to let you know about event IV! Events two and three donated to the Changing Places Campaign, Mary’s Beat – a fund that gives grants to people with profound disabilities to enable them to have musical adventures, SENSE International India, supporting work with people with profound disabilities globally, and other smaller charities.

At event IV, there will be more than 20 presentations, delivered by people with profound intellectual and multiple disabilities themselves, by the parents of people with profound disabilities, by professionals whose work focuses on supporting people with profound disabilities and by academics whose studies focus on finding out knowledge to use to support people.

Tickets cost just £7.50 and give you access to the private Facebook group where you’ll be able to watch the presentations on demand from the 14th of January until the end of February. The ripples of what started out as a little daydream, distracting me from my studies, have spread to reach all around the world. I hope you can join us!

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Jo Grace
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