May 7, 2020

Today I am tired. The kind of bone-dragging, brain-fogging tired which renders me on the brink of functional. It’s nothing new. Navigating our current culture, and its associated systems with a severely disabled child isn’t exactly energising. But today marks almost exactly six weeks since lockdown began. A whole summer holiday’s worth of time that I’ve been expected to be teacher, carer, parent, cheerleader, motivator, expert in all things SEN, and advocate extraordinaire for basic support which should have been readily available, but in reality wasn’t ever there to start with.

My son was born with a rare chromosome disorder which renders him severely disabled and needing round-the-clock care. Our mundane everyday comprises uncontrolled life-threatening epilepsy, severe learning difficulties, autism, communication challenges (at 12 he remains entirely non-verbal), excessive hyperactivity, and complete dependency on the adults around him to keep him safe.

Rightly or wrongly, I’ve grown used to the cultural narrative surrounding disability in 2020 Britain. My son is frequently the subject of questions which leave me aghast: When are you going to put him in care? Does he go to school? What’s his life expectancy? Will he ever talk? Frustrating? Yes. Exhausting? Absolutely. But these questions represent something bigger than people’s one-off awkward foot-in-mouth moments. They’re reflective of a carefully constructed, economically-driven system in which people’s worth is reduced to what they are able to contribute on a purely fiscal level.

For almost a decade now the government has focused its efforts on reducing welfare; scrutinising the most vulnerable among us, it has systematically stripped back the support, and ultimately the dignity of those most in need of humanity. The mainstream media presence does nothing to challenge this, with disabled people portrayed through a lens of pity, at best, and demonisation, at worst.

I have a son who teaches me humanity every day. He’s shown me how to love beyond what I knew was possible. He’s expanded my empathy and compassion. He’s given me skills in advocacy, and a fighting spirit to speak up for those who have no voice. Because of him, I am a better human. And yet the message from all sides is very clear. My boy is a drain on the system who, due to circumstances entirely beyond anyone’s control, is unable to contribute anything of any worth to society. He needs costly round the clock care, expensive daily medications to keep him alive, and let’s face it, he’s really rather lucky to be here at all.

Back to lockdown. Once the initial cacophony had settled into an urgent background buzz, a key theme emerged in the national conversation — education. Essentially paraphrased by Children must continue to learn, global apocalypse notwithstanding. Schools reacted quickly to the questions surrounding exams. Parents were sent timetables and expectations were communicated. Discussions ensued about getting work online, and ensuring young people were still able to make educational progress in spite of the national situation.

Great, right? Wrong. This response all pivoted around typical kids and mainstream provision, filtered through the blinding middle-class privilege that assumed average ability, regular curriculum, laptop access, supportive furloughed business parents, and stockpiles of basic necessities.

Priorities and policies reflect underpinning values. Those values form the building blocks of our human expression. Insipid bias and implicit ableist attitudes pervade the very pores of a society, seeping like water into the cracks we’d much prefer to pretend weren’t there. Except here’s the thing. Winter will inevitably come. And when it does, those cracks will be blown wide open, exposing the crumbling foundation of a culture premised on nothing more than the intangible promise of capitalist success. The coronavirus pandemic may well be our wintry reckoning. People talk about it being indiscriminate, that everyone is at equal risk and that we’re all in the same boat. I disagree. While we’re all undoubtedly weathering the same storm, some of us are cruising by in relative comfort on our superyachts, and others of us are frantically bailing water from last year’s perished dingy we found buried at the back of the shed.

For relative sanity and treading-water-level survival, our family is reliant on hands-on support from no less than 10 additional people every week, not to mention the background team of professionals waiting in the wings to address the constant scene changes of behaviour, epilepsy management, educational support… etc etc.

When lockdown struck, we lost all our support overnight. We were suddenly thrust into trying to manage a child with 24/7 constant care needs, homeschooling three girls in key year groups, and enabling the keyworker of the house to continue his job as part of the social care response to the pandemic. Let me reiterate. With all the support we were receiving prior to the coronavirus chaos, we were at treading-water-level survival. It was already hard. We were already exhausted. It was never enough anyway. But to have it all ripped from under us in an instant? Hellish.

Let’s be clear on this. Children with disabilities and special educational needs are categorically some of the most vulnerable humans in the UK right now. My son is fully reliant on adults to meet all his needs, educational and otherwise. He attends a specialist provision and his curriculum is highly individualised to support basic life skill development. Reading and writing will likely never happen, but that in no way renders his education null and void.

The Government’s initial announcement that children with Education, Health and Care plans would continue to attend school proved nothing more than lip service. We have just entered the seventh week of no school provision: my son could not be safely managed in the school environment on a skeleton staff. It was made crystal clear from the start of lockdown that the school would not be open to him, regardless of the glaring irony that those needs and challenging behaviours constitute the very reason he should be prioritised for support, not pushed away.

All children with EHCPs have a significant level of need which in and of itself renders them more vulnerable than their typical peers. And yet, again, the children most in need are the children first sidelined in a crisis. The most recent move to nullify the very same documents that legally protect our children just stacks insult onto injury. The government have relaxed the legal mandates to provide the support outlined in EHCPs — local authorities have, in essence, been told to ‘just do your best’. Reasonable endeavours.

Now, I’m a pragmatic person. I understand providing the exact support to every child in the current socially-distanced dystopia is nigh-on impossible. But when you start reducing the solid legality to vague ambiguity, it only serves to pull at the seams of an already unravelling society.

Humanity matters. Our children matter. The richness and complexity of humanity cannot be reduced to a figure per capita. We see our true selves in those times where the world is momentarily shaken up and broken; where the contrived order evaporates and we are stripped back to bare souls. Resist the idea that economy and financial viability have to come first. Value people for people and the inherent intrinsic worth that comes with being human. Our children matter. Humanity matters.