Thank you very, very much to everyone who came to, or followed online, my inaugural professorial lecture at the University of Sheffield yesterday (13th March 2019). The powerpoint and text are now available to download.
On the eve of my son’s 23rdbirthday, I posted a picture of him standing with the Sydney Harbour Bridge behind him. Nothing unusual about that, you may say, young people travel these days, made possibleby cheap flights and hostels.
What makes this picture remarkable is that my son, according to those who judge these things, has a learning disability. Many of his peers are locked up in an institution, his life expectancy is 20-30 less than non-disabled people of the same age, because of discrimination and inequality. He is, at 23 already, potentially, middle-aged.
So as I lay in bed this morning, I began to wonder how was this picture made possible? What do people with learning disabilities need to live the lives they want to lead?
Friends (and colleagues): we have friends who support us, challenge us and together we made possible this world for our son, outside of the woefully low aspirations for people with learning disabilities that haunt their lives.
NHS: thanks to the NHS who removed a chunk of our son’s brain, he no longer has tens of seizures, nor sleeps half the day. Without the NHS that trip (that flight!) would not have been made possible.
Social Care: this is a tricky one. Three intrusive assessments before any support was given; 9 month wait once direct payments were approved; being made to feel like the problem in social care assessments for pointing out the problem with social care assessments (I still have no clarity about how parental ‘warmth’ is assessed); support being slowly and slyly eroded against a discourse of cuts that construct reasonable requests as unreasonable. But a week he enjoys, being outside in the sun, the wind and the rain is, for now, made possible by social care.
Education: another tricky one. A mixed bag of: acceptance and rejection; tolerance and correction; kindness and cruelty. A turbulent (litigious) pathway through mainstream education culminating in woeful ‘specialist’ FE provision and finally exclusion which led to a happier life outside of formal education where learning through doing the things you love has finally been made possible.
What keeps me awake at night, and writing blogs in the morning, is that what is made possible is also so easily made impossible. This life of possibility is fragile, as we know from the lives of so many other young people, the slightest change threatens to bring the house down. As we, his parents, age and if the care to which our son is entitled is slowly undermined, what is currently made possible will be made impossible. We live in a society, a culture and by successive governments who, at best, lack aspirations for, and at worst, dehumanize, people with learning disabilities .
But as I look at that picture, a wide grin and a wide brim mean that hope, too, is made possible.
The repetition of made possible is inspired by Saba Salman’s book “Made Possible”
With thanks to Sara Ahmed for this point.
[5} See http://rightfullives.net for details.
On #WorldMentalHealthDay take a moment to think about what it means to mother (or a person who takes on the mothering role) of a child or adult with a learning disabilities.
We live in a context where we know that our children are likely to die 20-30 years before their peers. 25 is middle age.
Mothers of disabled children are routinely characterised as in denial or over anxious. We are constructed as difficult, or, even, toxic.
We are held responsible for our own mental health – told not to be afraid to talk about just how difficult it is to parent a disabled child.
But it is not our children who cause us distress. We love them. It is the systems we are forced to engage with, and the discrimination that we and our children face, that drive us ‘mad’.
You can read about my visit to Queensland University of Technology’s Inclusive Education Forum here and watch the keynote video.
Latest blog post here: https://medium.com/soeresearch/improving-the-lives-of-people-with-learning-disabilities-e40f84cc906c
Recent blog with Nick Hodge on paren/professional partnerships here: