Here is a guest blog from Jen, a parent of someone with severe learning disabilities. In this honest and powerful piece, she reflects on how the crisis facing disabled people and their families has only deepened.
Does this resonate with you? Have your experiences been different? We would love to hear from you. Please comment or get in touch.
Over to Jen…
10 years ago I wrote of the systemic injustice – gagged by red tape, faceless, dehumanised. The despair felt by families. In the 10 years the mountain of despair has grown. The facts speak for themselves.
The SEND crisis.
There are increasing numbers of children with EHCP’s and with a lack of appropriate provision means higher support needs when they reach adulthood. Trauma has become normalised in children’s formative years – that’s systemic generated trauma – before adulthood.
The cliff edge on leaving school has now become a canyon.
Abelism.
Society has been saturated in the narrative that disabled people are a tragedy. Charity. Scoungers. A drain on the economy. Disabled people are not seen as equals. The disability labels are blamed. Parents are blamed. Society without realising are conditioned. Whole generations grow up on a diet of ableist rhetoric. And then some go and work in the care sector. Training for staff is a few weeks….days… Not the lifetime of families.
We need to challenge ableism like we are doing with racism, sexism etc.
The LeDeR report is a devastating document. People with learning disabilities are still dying and yet nothing much changes. Social murder a term used by Sara Ryan* highlights how poor health care, social isolation, and failures in safeguarding create lethal conditions. Suicide… Murder… Filicide… And suicide is a leading cause of early death for autistic people without a learning disability. Autistic females are at a higher risk of suicide attempts and self-harm than autistic males.
Chronic underfunding. Rising demand.
Parent blame **. Punitive contact orders. The ultimate gagging. A legal weapon used by Local Authorities against families who raise concerns about what they see. The caring system now punishing both parent and child for its own failings. Parents react totally logically to a system that in places is not fit for purpose.
Institutional gaslighting. Epistemic violence.
And at the same time some parents are held up as a warrior parent or hero..angel….romanticising their exhaustion. In other words overcoming the lack of funding and support.
Some organisations spend money and time on awards and accolades to “differentiate” themselves in a crowded market and build trust with families and funding authorities. Seeking validation for quality while their own reports record preventable tragedies.
I do recognise that there are pockets of social care working well for some. And some outstanding people across the industry. Sadly this is not consistent across the country.
A future of ableism, pity and stigma influencing society. Disabled people are used as heart warming stories…inspirational porn … local hero…beating the odds….In other words overcoming the lack of funding and support.
Just people needing support to lead ordinary lives.
Is your soul awake and outraged?
Suggested reading:
Stephen Unwins, Beautiful Lives: How we got learning disabilities so wrong.
*Sara Ryan, Critical Health and Learning Disabilities. An exploration of erasure and Social Murder.
And last but not least. I would also like say thank you Jonathan for your incredible act of physical and moral endurance that proves you have an “awakened soul” willing to go the distance.
