Three-year-old Jack has cerebral palsy and an autistic spectrum disorder. His mother Isabel Robson discusses the brain science behind these two conditions, and how activism and science fiction are changing our view of disability. Illustrations by Nange Magro.
The human brain is still a largely unmapped organ. We use our whole brain, not the widely reported 10%, but we do not necessarily all use our brains in the same way. Your brain is a route map of your life, but for some of us the journey is different to others. In the case of disabilities that act within the brain, such as cerebral palsy and autistic spectrum conditions, the brain functions differently to most.
My son Jack was born in 2006, nine weeks premature. Nineteen months later he was diagnosed with cerebral palsy and an autistic spectrum condition (ASC). There had been no indication during the pregnancy that anything was amiss.
There had been no indication during the pregnancy that anything was amiss.
Cerebral palsy is an ‘insult’ to the brain, meaning it is something that damages the brain in some way. For Jack, this happened while his brain was still developing. We don’t know what caused the damage, but it seems likely, going by current research, that it stemmed from his early arrival or an in utero infection. Adults can also develop cerebral palsy through accident or illness.
Damaged brains or brains that do not develop correctly cannot regenerate, but other parts of the brain may compensate for lost function. Jack’s cerebral palsy acts is like faulty electrical wiring, sending incorrect pulses to nerves in his muscles. In a normally-wired nervous system, an electrical impulse is sent to the muscles, which contract together in response, like a single flash. Jack’s electrical impulses are more like a shower of sparks, causing his muscles to work irregularly. If this is not addressed through physiotherapy or exercises, muscles can become overdeveloped or permanently weakened, causing bone deformity. Many people with cerebral palsy experience problems with overdeveloped muscles developing ‘spasticity’, which is where the derogatory term ‘spastic’ comes from.
Jack’s cerebral palsy acts is like faulty electrical wiring, sending incorrect pulses to nerves in his muscles.
The faults in the brain’s wiring can be mild or severe, with children having very different outlooks. Jack has mild to moderate cerebral palsy, in that he can eat, breathe, has a good use of all his limbs and has the ability to make sounds, but he is only just walking at three years old and cannot communicate verbally yet. Cerebral palsy is non-progressive and life outcomes vary massively. Many have normal or above-average intelligence and cognitive development, limited only in their physical development.
Autistic spectrum conditions are often described as a developmental or behavioural disorder, and is 12 times more likely to be diagnosed in boys than girls. The causes of autism are still under debate, but there is a strong genetic correlation — siblings of people with autism being more likely to be diagnosed as being on the spectrum.
An autistic brain is wired completely differently. Autistically-wired people often find logic or science very easy to understand, but social situations confusing and difficult.
An autistic brain is wired completely differently. Autistically-wired people often find logic or science very easy to understand, but social situations confusing and difficult. In more extreme cases, the brain has limited abilities to filter out the constant stimulation of the external world, and strategies are developed to help the individual cope with the vast amount of information they are receiving. Jack experiences social situations like a game that he doesn’t yet know the rules of. He finds open-ended questions such as ‘what do you want?’ bewildering, but can easily choose between a selection of identified variables. In one assessment Jack was in a room with a yellow and a red chair and asked ‘which do you prefer?’ He put his yellow brick on the yellow chair, his red brick on the red chair, then sat on the floor and grinned, because as he saw it, he’d made a logical decision in a chaotic situation.
Top five things said to parents of children with disability
- ‘I’m so sorry.’
— Why, what did you do?
- ‘He looks so happy.’
— That’s because he’s got a piece of chocolate.
- ‘I don’t know how you do it.’
— What else would I do?
- ‘But he looks so normal.’
— He is normal. He just has cerebral palsy.
- ‘I don’t think it’s fair that your child gets extra benefits.’
— There really is no answer for this.
The medical model of disability
It’s usually in the medical context that parents first come into contact with ways of approaching disability. We had the full works: consultants were called in, curtains were drawn around the cubicle and everyone spoke in very hushed tones. When finally told that Jack had cerebral palsy, I felt so relieved to learn that he wasn’t going to die then and there. Thirty years ago we might have been asked if we wanted him sent to an institution.
Thirty years ago we might have been asked if we wanted him sent to an institution.
The medical model of disability sees a ‘disabled person’, a normally functioning individual with a problem or defect that stops them participating in everyday life. The medical system then offers various solutions and ways to normalise this person. Children with Down’s Syndrome may be offered surgery to trim protruding tongues or reshape their eyes. Doctors may offer children with cerebral palsy Botox to relax joints and ways to reduce dribbling. As you can imagine, this direction is a fairly depressing outlook for everyone involved, especially for people with these conditions, who may not want to be fixed or made more normal.
The medical model may also extend to screening for and removing disability in utero if parents so wish. The NHS has routinely offered an ultrasound test to detect the risk of Down’s syndrome for decades, a practice which seems to support the arguments by people with disabilities that the medical establishment sees them as flawed or imperfect. In January 2009 doctors at University College Hospital London announced that they were applying for a licence to screen foetuses for autism.
The social model of disability
In response to the medical model, in the 1970s disability rights activists developed the social model of disability. The social model sees ‘a person with a disability’ — in contrast to the medical model the person is the focus. According to the social model Jack is disabled by society — because there is not sufficient provision for him to participate in activities that he could do if he was not disabled. It’s all well and good having a youth club nearby but not much use if it doesn’t have a wheelchair ramp or an accessible toilet.
As children with disabilities grow up, the barriers tend to multiply. Young people with disabilities are more likely to be unemployed than their peers and less likely to take up work experience placements. According to Mencap, only 20% of people with a learning disability are in paid employment — compared to 50% of people with disabilities generally.
The impact of disability activism
In the UK, legislation against disablism was only passed in 1995, some 20 years after legislation against sex and race discrimination. This was largely due to the efforts of disability civil rights activists in the 1990s. The inaccessibility of public services was highlighted when several activists were arrested and Police discovered that their vans and buildings were unable to meet these activists’ needs — Police found they had to carry a table to the foot of the station steps and book the activists there.
The inaccessibility of public services was highlighted when several activists were arrested Police found they had to carry a table to the foot of the station steps and book the activists there.
Public services were only given a duty to promote disability and accessible services in 2005, and the playing field is still not level. Currently people with learning disabilities are 58 times more likely to die young, in part because the healthcare system lacks awareness of their needs. Disabled people are also more likely to be victims of crime and harassment than the general population, but less likely to see their complaints taken forward.
Neurodiversity and neuromancing
Some people with disabilities have understandably rebelled against the perception that they are in some way less valued than the mainstream population. At the forefront of this uprising is the neurodiversity movement. Neurodiversity was coined in the 1990s by Judy Singer, who is on the autistic spectrum, and popularised by The New York Times journalist Harvey Blume. The neurodiversity movement argues that any neural differences should be celebrated and respected, rather than erased or unlearned. The term neurotypical is now commonly used by those with an autistic spectrum disorder to describe those without, thus turning the tables on mainstream labelling.
Top five television characters with disability
- Dr Greg House (House) — bitter and amoral: a nice reminder that people with disabilities aren’t necessarily sweet and brave
- President Jeb Bartlett (The West Wing) — proving that multiple sclerosis doesn’t stop you being being President
- Dr Al Robbins (CSI) — The actor has a false leg and uses it as an air guitar
- Dr Dixon (Grey’s Anatomy) — Described as one of the best heart surgeons ever, and also has Aspergers’ syndrome
- Barbara Shapiro (Nip/Tuck) — A deaf publicist who verbally kicks the backside of the odious Dr Christian when he mocks her speech
Several science fiction authors have explored the neurodiversity concept, notably William Gibson in Neuromancer. The novel is set in a reality where people actively choose to alter their brains to maximise desired traits, creating a neurodiverse society. One character, Molly, is wired to be the perfect assassin, with super-fast reflexes and reduced morality. She comments that she cannot help the way she is, it’s simply ‘the way I’m wired’. In a case of life potentially mirroring art, Professor Simon Baron-Cohen recently suggested that autism may be linked to increased ability in mathematics, due to the unique way the autistic brain functions, pointing to theories that neurodiversity represents evolution of the human brain.
Several science fiction authors have explored the neurodiversity concept, notably William Gibson in Neuromancer.
Until we do move towards a society approaching that imagined by Gibson, can people without disabilities learn to look beyond surface differences? The future of disability awareness looks optimistic, with wheelchair users in several childrens’ shows and Cerrie Burnell, who has one hand, employed as a CBeebies presenter. Burnell’s appointment sparked complaints from some parents claiming she was scaring toddlers, to which BBC blogger Disability Bitch responded,
‘Pre-school children ARE NOT scared of disabled people. If they were, doctors would’ve been flooded with emergency call outs every time Cerrie appeared on screen, disabled people would live under curfew to avoid upsetting the young’uns when out in public, adverts for disability charities would only feature in top shelf magazines. It doesn’t happen. There’s nothing to debate. Nothing.’
Discrimination against disability is often born of misconceptions and stereotypes, so it follows that attitudes will change through increased exposure to, and promotion of, disability as part of normal human diversity, akin to needing glasses or having red hair. As a parent and a person, I hope that we do eventually reach the point where, as Disability Bitch says, there is no debate over the worth of a person based on their disability. As we raise our son we hope to teach him that his conditions are part of him, and that he is free to celebrate his different wiring as part of what makes him unique.
This article appeared in Filament Magazine Issue 2: September 2009. Unfortunately that issue is now sold out, but you can get our latest issue here.