He Ain’t Heavy, He’s My Brother

Mental handicap seen through the ages

Mentally handicapped

My brother, who was two years younger than me, was deprived of oxygen at birth and this resulted in a severe mental handicap. The anxiety and the worry emanating from my parents enveloped my family like a shroud. Why was my brother like this? Was there some hidden illness in the family? It was none of these things. Not much was known about mqqqental illness in the 1950s; people had to get on with it – if they could.

We learned more than 25 years later, more than 25 years because apparently then my parents couldn’t prosecute for negligence, that the reason why he’d been deprived of oxygen in a room full of doctors and student doctors was that they’d been chatting – my mother remembered this – and therefore not concentrating on the task in hand.

As a consequence of my brother being so unwell, my distraught parents would leave me with different family friends for a few days at a time, while they visited different specialists in the North West of England with my brother in tow. They did this by taking a variety of different trains and buses (in common with most people they didn’t have a car and they didn’t have a car until I was 11 in 1964.)

Meanwhile, due to the emotional disruption connected to what was happening with regards to my brother, I too was struggling and was a very withdrawn child. My parents were called to a meeting at the primary school I attended and they were told that they had concerns that I might be deaf because I hardly ever spoke. (No one who knows me now can believe this but it’s true.) Apparently I would go through an entire day barely talking to anyone. Although I was a fluent reader from a young age, my diminished confidence was affecting my school progress. 

All this time a tragedy of huge proportions was playing out within the confines of the flat that I called home. My brother was clearly unwell and my parents were at their wits’ end. As with any family, their relationship struggled (whose wouldn’t?) and ultimately, as a last resort it was decided that my four year old brother would have to go into a mental hospital.

To be honest, for decades I buried that fateful day when my beautiful, angelic looking brother with the thick mop of blonde hair disappeared from view as my six year old self watched my grieving, tall, father walking (with his head tilted to one side as was his custom) towards an industrial soot-clad monstrosity that had been reclassified as a hospital. Smoke belched out of surrounding chimneys: this was Swinton, then the uglier side of Manchester. 

Author’s brother at 18 months outside the family home

Memory of a Sad Father

What is it that we can tell by the way that someone is walking that their heart is breaking? My father was clearly distraught; he walked in a particular way when he was agitated, with his head tilted to one side. He was tall, over six feet, so it was noticeable how he walked, because he towered above many other people.

Over decades I had forgotten all of this, in the way that we all hide the painful memories. It was during counselling over 40 years later that this sad memory was retrieved, causing me to dissolve into tears. My brother never returned to live at home. He spent the rest of his life incarcerated until he died at the age of 29 (in a tragic way, but that’s another story).

Editor’s comment

First Experience of Children with Learning Difficulties

I trained as a teacher in 1971. As part of the course, we were guided around one ESN school (for educationally subnormal children) and one SSN school (for severely subnormal children). I can recall being especially shocked by the SSN school as I had never seen children with this degree of disability.

They were never taken out and about in public by their families, as we see today, and in my entire childhood I encountered only one such child, a “mongol” as they were known then, being cared for in a family. I remember thinking at the time that this family, the siblings that I knew, seemed much more sensitive than others in my circle and just more aware of other people’s needs.

Later Experience of Additional Needs Children in Main Stream

Fast forward to the experience of my own children in a small village school in the 80s. There were three differently abled children in the school. Each with special assistants, they were able to manage in a normal mixed ability class. Most importantly, they were at the same school as their siblings, and were able to interact in the playground with the other village children.

Warnock Report

What brought about this change was the Warnock report of 1978, with recommendations that were incorporated into the 1981 Education Act.Before that,  “feeble-minded” children had been segregated in special schools, or medical institutions such as Swinton. Societies have progressed from the “village idiot” treatment of “imbeciles” (which is still prevalent in some subsistence societies today). The next stage was when separate charity institutions were started for their care, as in England in the eighteenth century.

Once local government was given responsibility for schooling all children in their area, asylums were set up. By 1916, there were 179 such institutions in the UK catering for 14 000 children. But the experiences of childhood in such places was often miserable as the testimony of survivors shows.

The 1944 Act

The 1944 Education Act gave local authorities the duty to provide for all children according to their age, aptitude and ability, leaving only the “ineducable” in the care of the new NHS. This category of “ineducable” grew larger (from 38 499 in 1945 to 106 367 in 1972, about the time I was taken on the tour of the SSN school).

One explanation of this is that those in these institutions were over-medicalised: treatment was prioritised over education and socialisation. Even though the 1944 Act had set out principles of integration, and more money was given for this under the 1945 Act for handicapped persons, the preference was for using this money for special schools. The testing system (IQ psychometrics) could not detect class or dialect so, for instance, too many Caribbean children ended up in special schools.

Lady Warnock’s Recommendations

Warnock’s report righted this by redefining special needs in terms of:

  1. location, the child should preferably go to the nearest school
  2. functionality – assistance could be given appropriate to the different functions required for the child to perform better
  3. socialisation – the child should not be isolated from the family or the local playground.

So that brought about the system we have in the UK today.  A child in need of special assistance has to be “statemented” for SEN (Special Education Need). There is a special unit in the KCC to operate this system.  It lists how to get a child “statemented”, how to get extra funds for special care, transport, and even respite provision for the carer.

The problem is how long will these services be adequate, in an era when local government is suffering from cuts?