Outcasts: Parent voice

Before I had my daughter, who is autistic, I thought I’d already experienced or witnessed the worst disability discrimination that British society had to offer.

I’d grown up listening to people using the term ‘spastic’ as an insult and doing unkind impressions of  Joey Deacon, a man with cerebral palsy who appeared on the children’s programme Blue Peter in the early 1980s. Many years later, I worked alongside people with a learning disability who’d experienced hate crimes, bullying and horrendous oppression in long-stay institutions.

And as someone who had lived with anxiety and Obsessive Compulsive Disorder (OCD), as well as chronic pain, I’d also personally felt the sting of unempathetic and inflexible attitudes towards me at work; an experience that is probably not uncommon among people with invisible impairments.

By mid-life, I considered myself a battle-scarred veteran of disability discrimination. I’d seen or experienced the worst of it and, in any case I thought, society had evolved and become kinder and more progressive.

Sadly, when my daughter Suki reached two years of age, I embarked on an unpleasant voyage of discovery that showed me how wrong I’d been.

When Suki was about 15 months old my partner and I began to suspect that she was developing differently. She wasn’t talking and nor was she responding to her name, even if we yelled it at her. We monitored Suki and had her assessed and tested by different professionals and by the time she was two years old we were certain she was autistic and had a preliminary diagnosis that said as much.

We drafted in as much support as we could and had her assessed by a local authority educational psychologist (EP) at her private nursery in Wimbledon. The EP agreed that Suki needed tailored support at her nursery and Merton council released the funds to pay for it.”

This ushered in the beginning of a series of disappointments.

No matter what we said to the nursery they never implemented the programme laid out for Suki. They claimed they just didn’t have enough staff available to put it into practice even despite the extra funding they’d received. I would add to that that their staff also didn’t have enough training to be able to support a child with different needs, despite the enormous profits earned by its bosses.

For one and a half years the private nursery failed to deliver Suki’s tailored programme, causing Suki to lose precious developmental opportunities. While this was frustrating and painful for me and costly for Suki, I didn’t find it shocking.

We live, after all, in a capitalist, winner-takes-all society that lauds celebrities and those endowed with advantages  – it simply isn’t set up to cater for those born with impairments and nor does it care about them. Those who appear unlikely to succeed in the competition for wealth are irrelevant to the game – human wreckage to be cast aside in special schools and day centres.

What did shock me, however, was the nursery staffs’ decision to provide Suki with a range of dog toys obtained from a Wimbledon pet shop. The symbolism of this was devastating – my daughter was being treated, quite literally, like an animal. I raced down to the nursery to complain and received an apology from a subdued manager. I was nonetheless left with the sneaking suspicion that they didn’t really see what the problem was.

None of this was as bad as what was about to happen though.

When Suki was three years old, we moved her into the nursery at St Anne’s Catholic primary school in Vauxhall, Lambeth. By the time it came to applying to St Anne’s we had collected a raft of paperwork about Suki’s needs and had in place an Education Health and Care Plan (EHCP) along with a funding package for a one-to-one teaching assistant.

The school’s Headteacher, who had autistic children of her own, knew all about Suki’s impairment and warmly accepted her, both in person and in writing, saying she was welcome to the ‘St Anne’s family.’

But just five weeks after Suki started there, St Anne’s new Headteacher wrote a letter to Lambeth council saying she wanted Suki to be removed from the school by the following year because of her needs, which, we all knew, were directly linked to her autism. She claimed her presence at St Anne’s was ‘incompatible with the efficient education of the other children’.

It took me some time to absorb the meaning of what had happened. Suki was just three years old – my God, to me it felt like she’d only just been born – and yet she was already being shunned, not by a fellow three year old, but by a school, an institution considered by most to be a pillar of society.

Not just any school either, but a religious one with the strapline: ‘the light of Christ shines through every child’. It also claimed in its blurbs to have an excellent track record of supporting children with EHCPs.

What made matters even worse was that during the first term, St Anne’s had also failed completely to implement Suki’s EHCP, had not responded to most of our emails or requests for meetings and had not taken up our offer of private training support until close to the Christmas break.

When we finally did manage to arrange a meeting, on the last day of term, we asked the new Headteacher why Suki’s presence in the school was ‘incompatible with the efficient education of other children’ (this is one of three stock phrases, outlined in the Children and Families Act, that schools can use when rejecting Disabled children).

Suki always had a one-to-one teaching assistant with her, and she is a sweet natured and loving child, so how, we asked, was she disrupting the play of the other nursery children?

The Headteacher said the problem was that Suki mouthed objects due to her sensory needs, meaning staff had had to ‘put their health and safety on the line’ by plucking the items out of her mouth. It had also compelled them on occasions to put some toys away, which had meant other children hadn’t been able to access those particular toys for brief periods.

So, she was being expelled, in effect, because of a sensory need arising directly from her autism.

I won’t go into the details of how I responded to this, but I will say that I spent some time after that meeting reading up on the law on educating Disabled children. To my relief, I found much in the Children and Families Act, the Equality Act and UN Convention the Rights of Disabled Peoples that defended the right of disabled children to enjoy a primary and secondary education, including a mainstream education.

Once I had my guns lined up, I penned a 20-page complaint about St Anne’s sloppy performance and their discriminatory treatment of Suki, a three year old child with autism.

To be sure that Suki would have a place the following year, we applied to twelve other schools while waiting for St Anne’s response.

Little did we know that another horror show lay in wait for us.

We first of all visited another religious school called Archbishops Sumner and were left speechless when the Head and SENCO told us flatly that they would not use Suki’s budget to hire a one-to-one teacher. As our jaws dangled slack and our eyes widened, they explained they would disperse the money around the school to pay for ‘training in general’ and ‘you know, just staff’.

The Head then sent a letter to Lambeth saying Suki’s presence in the school would be ‘incompatible with the efficient education of other children’ (yes, that tired old line again) and that there was no point in Suki attending the school without one-to-one support – the very support they had just refused to give despite there being a budget for it!

And then things got worse.

A school called Oasis in Waterloo also turned Suki down, saying she was a child of violence who’d pose a serious risk to children and adults alike. This was because of Suki’s previous habit of gently cupping people’s cheeks in her hands to say hello, a gesture so gentle it could make a grown adult cry.

Schools with autism units inside them also turned Suki down as did one specialist autism school called TreeHouse in Highgate, one of only two out-of-borough schools we applied to. TreeHouse said they couldn’t admit Suki because she had occasionally felt fear in the past (due to her autism) and we lived too far away.

Being rejected by TreeHouse was a little like being turned away from a fish and chips shop for having the temerity to ask for fish and chips.

In all, 12 out of 13 schools rejected Suki, including, initially, St Anne’s.

As school after school turned us down, it seemed like society, as a whole, was shutting us out. I felt then that I could imagine what it must be like to be a member of a leper colony, reviled and banished from mainstream society. No other protected characteristic group would face this level of exclusion. If they ever did, it would surely make the headlines in the national papers.

I didn’t have the resources of energy or time to challenge all the schools so I just put in a complaint to Oasis, the school that had made Suki out to be Charles Bronson in nappies.

Oasis backed down and so, after three months of deliberations, did St Anne’s. In their letter, St Anne’s said they would accept Suki because it was religious establishment and as such it believed in a quote from the Old Testament that says: ‘how we treat the very least of our brothers is how we treat ourselves.’

It made their stance clear. Suki, to them, was of little value – the least among us.

Those schools’ arguments for rejecting Suki were morally and legally weak and they’d probably have lost if we’d taken them to court. They were trying, I suspect, to protect themselves from having to make any adaptations that would cost them time, energy and resources and they didn’t much care about the impact of their decisions on us.

Just one school said they’d be happy to accept Suki, a mainstream primary school called Heathbrook.

The Headteacher there was warm and welcoming from the start and called me on my mobile phone a few times to talk about transitioning Suki to his school and the ways they could support her to develop to her full potential.

Their upbeat and welcoming letter came after we’d received ten icy rejection letters and by the time we got it, we were deeply distressed. Reading the Headteacher’s kind words almost caused me to break down in tears of relief. His offer restored some of our faith in society and humanity and brought us solace and comfort when we were feeling like social outcasts.

Heathbrook is significantly further away from us than St Anne’s and we didn’t want Suki to go through a change of location, setting and staff; however, we eventually decided to move her there because, in the end, attitude overrides all other considerations.

The stance of Heathbrook’s Headteacher makes a mockery of the positions adopted by the other 12 schools, showing they most certainly could have taken Suki on if only they’d been willing to accommodate her differences.

Reasonable adjustments are not always about ramps, lifts, widened doorways and different forms of reading material – sometimes they are mainly about attitudes.

Heathbrook will not go up in smoke when Suki joins this September. Nor will its children have their educations and futures ruined because Suki is there. Instead, they will have their social educations enriched by having someone among them who is neurodiverse. They will also, I suspect, adore Suki for her infectious smile and laugh and her sheer difference, just like the children at St Anne’s did.

Stories like this shouldn’t be getting told in Britain in 2023. The fact that they are shows there needs to be a fundamental shift in attitudes in many quarters before Disabled people can hope for meaningful improvements.