Lucy Parr with her son, before lockdown.
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.
Lucy Parr is a trainee educational psychologist at the University of Exeter, and a disability advocate.
luceparr 
Join the discussion
Join like minded readers that support our journalism by becoming a paid subscriber
To join the discussion in the comments, become a paid subscriber.
Join like minded readers that support our journalism, read unlimited articles and enjoy other subscriber-only benefits.
SubscribeI’ll get slaughtered for saying this, but here we go.
We were a generation that experienced polio, scarlet fever, diptheria, smallpox and many other illnesses. Some caught them, some didn’t, We accepted that as part of life’s unfairnesses, just as we accepted that life was more or less finite at three score years and ten. All my male relatives were dead before their 61st year was up, yet like myself, many of us now live into our eighties relatively fit and healthy, in part because medical science and education has enabled that, just as medical science has made it possible for babies to survive when in an earlier generation they would not.
But that same medical science that we carelessly label as “progress” has dumped the results of that “progress” onto care homes for the elderly, that in earlier times would have lived a natural lifespan followed by an acceptance of death. Now we are conditioned by science to believe we can live into our nineties, if not forever.
That same medical science that “saved” all those premature and sick babies has similarily dumped the consequences, – the lifelong aftercare and the heartache, – onto parents and other carers, – ruining their lives in the process, while casually sailing onto yet more medical interventions, and equally casually ignoring the consequences for famillies of their “medical advances”. All human interventions have consequences. If medics had any conscience at all they would themselves pick up some of the pieces of the wreckage they leave in their wake.
I agree with some, but not all of this. Firstly, I consider medical science is mostly benign -doctors, nurses, etc… acting to ease pain and suffering. I don’t believe they are casual about it, or lack conscience. They are under enormous pressure to ‘make things better’. I know of very premature babies saved from certain expiration who have had complete lives absent of any disability or deficit. I know of others for whom things would certainly have been better had they not been ‘saved’ by extraordinary medical technology. These are very difficult decisions to make, often in situations where the outcome of medical intervention -in terms of quality of life -is simply not known. Traumatic brain injury is a classic example of this difficulty.
The interventions developed today -that seem to be false progress- may in fact develop into real progress in the future. I don’t think medical science has much choice but to focus on what it can do- advancement by increment.
In terms of this article -I don’t actually believe the writer when she says that ‘Insipid bias and implicit ableist attitudes pervade the very pores of a society’. Of course it is true that we have built a society around ‘ableists’ -because the reality is that the vast majority of us are ‘ableists’ -we need ableists to be catered for so that we can continue to build society. That doesn’t make us all bad people in a bad society. There is a wealth of care and compassion out there too -imagine the situation just 50 years ago.
Attacking ‘ableists’ and trying to make them feel guilt and shame because you are facing extremely difficult experiences is wrong. ‘Society’ caters for minorities in the best way it can and according to its resources. I’m not saying it gets it right -it makes many mistakes and slowly learns as it develops. I sincerely hope it continues to develop so that people like your son receive the help he needs and deserves -and I support entirely your lobbying for better protections etc… -but I don’t buy the falsehood that we are all inhuman because we have not managed the suffering of everyone.
Additionally this care does have to be paid for, and for this a very able economy is very necessary. I would invite you to calculate the cost of your son’s extensive care – which is paid for by others, without complaint, through the society that you denigrate. You may choose to focus on a handful of unpleasant comments you have received but I suspect you have had far more by way of help and support from others than unpleasantness during his life. Your article has not a single mention of gratitude for anything provided to you but targets with considerable envy anyone who has more -as if they shouldn’t have any more until you have everything that you need.
Furthermore, can you really blame healthcare providers/ teachers/ carers etc… for not attending to your needs as usual during this time? Many of them have children and families who they are understandably worried about during this pandemic -do you expect them to put their lives and their families lives after your needs?
When this crisis is passed, all that support will be returned to you -enabling you to complete your training as an educational psychologist. I have to say I think it’s a pretty remarkable society that enables all that to happen under all the circumstances.
I sympathise entirely with your predicament -but not in any way with your way of seeing it.
I think this is very well said. The circumstances of Covid have been hard for most of us. The writer seems to blame us for not caring enough. We do care but this virus has made many situations impossible. My daughter helped in a school for children with similar conditions. I was impressed with the care and love she described to me. I hope these wonderful schools open again soon when it is safe for them to do so.
Our children do matter, but our ability to educate them and look after them to the extent we do, is a reflection of the wealth created by the capitalist system and the industrial revolution.
I am sure that in earlier times, most parents loved their children. However there was not the wealth, even to send most to school. It was more vital to make them work on the land – to stop starvation.
So, yes, the economy and financial viability has to come first, then the benefits can be spent on families like yous.
For real. How much charity can a society afford when the average GDP per person per year is $500 or less?
Medical advances that allow very disabled children to live well into adulthood mean very difficult questions need to asked about the balance of whether the caring and the cost financially by society should be met against the greater needs of other priorities for society. The vast majority of individuals with significant medical and or emotional needs are not able to be cared for by their families and the burden is carried by society, as well as the individual being institutionalised and without being able to contribute to society their whole life. I do completely understand the amazing love shown by parents and carers and the real relationships that can be forged.
I think the questions that need to be asked is not about the cost of caring but about the cost of donating to societies outside of the uk. Everyone who works in the uk pay taxes and this is what pays for care and the needs of all in our country. The pot is only so big but this government and those before have decided to donate billions over the years to other countries. I know what is going to be said now “those countries are worse off and in greater need” but when our own people like the case written about cause hardship it is time to think again about what takes priority..Everyone but everyone in the uk is entitled to the care they need because it is not free, it is paid for by all of us, so until we all receive the care we need the government should stop paying out overseas and invest in our own people
You are absolutely right that far greater care and responsibility needs to be shared throughout society for those with disabilities and their families. But while ours is still a culture of individualism this is unlikely to happen – it’s survival of the fittest, the Darwinian ideal, and everyone else can sink or swim. Of course there are plenty of people who don’t think like this, who genuinely care for others whatever their circumstances, but they’re not the decision makers or opinion formers, and they don’t hold the balance of power. The moral and spiritual compass in our country (and most other countries too now) has been trashed by an unholy alliance between secular materialism and free-market unbridled capitalism. So the “weak” /unproductive members of society or those needing extra support go to the wall.
That said, I wonder why you are “aghast” at questions such as “does he go to school” or “will he ever talk”? People who may not know much about your son’s condition or how it effects him may have genuine, caring and concerned enquiries. If they are going to be dismissed and considered crass and ignorant and insensitive just because they don’t have privileged insight into your situation then they’re likely to withdraw and be reluctant to be involved. Guilt-tripping others for not being sufficiently politically correct is hardly going to help.
It is difficult to talk about, but some lives are more worth preserving than others, and here in Canada anyway, the “tragedy” of COVID 19 has only occasionally been a true tragedy, and in my area it has been largely been a mercy.
One of the deaths in a local care home was a man who was a friend to my parents. In 2016 my father died suddenly just short of 79yrs old in 2016, after skating and playing guitar with friends at that nursing home the day before. That is to say, he had a very full and good life and then died all at once, rather than bit by bit over a long time. In 2015, my dad had come home from visiting that friend and told me “If I’m ever like ____ make sure to put me out of my misery”. He was serious. This man did not recognize family, he was aggressive with nurses as he could not recognize they were helping him. He was poorly mobile. There were no activities he could enjoy in any way. And that was 2015. By 2020 he was bed-bound, contracted, diapered, and rolled frequently to avoid bedsores. He died of COVID. Tragedy? Nature? A mercy? You tell me.
As a doc, I’ve never actually met someone who says “when I am old and demented and immobile and don’t recognize my family any more and hit the nurses when they change my diaper I want to be kept alive as long as possible”. And yet our system is set up to do this. We treat these people with antibiotics for pneumonia, give them flu shots, isolate them to protect from COVID, put feeding tubes in them, etc.
I’ve often said that if I ran a care home for elder dogs who were in the same state of being as the humans I see in NH’s, the SPCA would take me to court and I would go to jail for animal cruelty.
As a disclaimer – I do meet people in care homes who are mentally well and have some joy in their lives, despite their limitations. But they are the minority. Nursing homes are not “Long-Term Care” they are “End-of-Life Care”, and we should not wish longer lives on most of these patients – that is a cruelty not a kindness.
I am so sorry to read this. Yet another sad casualty of the ill-conceived, hysteria-led reaction to the advent of Covid-19.
You had me until you lapsed into the jargon of the terminally woke when you wrote of the “blinding middle-class privilege that assumed average ability…”
I have noticed lately that the left lapses into the usual accusations of “privilege” as a rhetorical means of bolstering any argument that requires special- pleading to support its premises.
Words matter, because their implications and connotations are what often carry an argument based on emotional appeal, a kind of discursive bullying used as a persuasive device.
Middle-class people are perhaps “fortunate” in being average, or in having access to certain educational facilities.
But fortune isn’t privilege. By definition, “privilege” means access to rights not available to others. By definition, average people can’t also be privileged, otherwise the word loses its essential meaning. The rich may have undeserved or unearned privilege if their wealth buys them special favours. But middle-class people have rights, not privilege.
If your son doesn’t have access to those rights, then he is a victim of discrimination. But arguing that those who have rights actually have “privilege” implies that middle-class people have rights they don’t deserve.
And that’s just not true.
This kind of poor reasoning, based on the use of rhetoric rather than reason, undergirds much left wing argument, as in “white privilege” or “male privilege”, both of which actually rely on racist/sexist tropes. The real language of equality doesn’t conflate human rights with “privilege” but instead insists that human beings should have equal rights, and those deprived of them are the true victims of discrimination.
When basic human rights are characterized as “privilege”, we are on our way to justifying their elimination for some people, probably based on their race or gender.
This article illustrates the great seriousness with which parenthood should be undertaken. The author mentions apparently 4(!) children in total and perhaps 2 parents (that part was unclear to me). Life is of course going to be pretty difficult if this is the path chosen, particularly if one child is severely disabled, which is always a possibility. The boundaries of state care are being stretched here – the largest part of the care of children, I believe, should fall on the parents, who are the undertakers of this great and rewarding adventure, and of course the extended family of the children (the amenability of extended family being a factor that one must take into account when deciding to have kids). The decision must also be balanced with the need to look after elderly relatives either now or in the future. The state system is a safety net, and it sounds as if it has been very helpful thus far though it may reasonably be less than ideal during the present crisis. While I truly feel great empathy for the difficulties this family must presently be enduring, I cannot emphasize enough how I much feel that the weight of it ultimately rests on the parents’ and extended family’s shoulders.
Your son does matter. And huge respect to you for all you are doing.
You speak of services being cut back . And undoubtably this is true. But its not all about money.
Services do get cut back because of money.
They also get cut back where taxpayers object to them being abused.
And increasing the population by another million every three years means that without additional funding the population size of itself will reduce services.
Needed saying
Brian Burnell, my son has not ruined my life, or brought me heartache, but reading things like your post do. Don’t judge it ’till you do it.
Yes but the question of the lifelong aftercare is an important one.What happens when you die Louise? I know it is a question that must haunt you.
The treatment of our most vulnerable in this period of lockdown and isolation gives the lie to the idea that we are a more caring and sharing society thanks to our relative wealth. The same is happening here in Australia. My 84 year old mother is isolated and alone with her 15 yo developmentally and behaviorally challenged grandson (alcohol fetal syndrome). Her “assistance” has been reduced to occasional phone calls asking how things are going.
The civilised West? Yeah – right!
There’s an infinite amount of “need” but a finite amount of resources, so your definition of “civilization” must be that it be infinitely generous to the least productive. Nice world.
I’m not saying we’re doing a perfect job -far from it -but in terms of ‘civilised west? Yeah -right!’ perhaps it might give you solace to reflect on the plight of others in so many countries where your mother, and others, would be infinitely worse off.
above already
Fantastic that you live in one of the few countries in the world that has provided so much for your son, for so long, for free, at tax-payers expense. Makes me proud to be British.