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Brain conditions ranging from Tourette syndrome to dyslexia and autism make life complicated enough without the added burden of prejudice and exclusion.
Bruce Munro talks to parents and experts as well as some outstanding neurodiverse individuals who are finding their way in an ‘‘ableist’’ world.
Imagine this. Someone who has involuntary verbal tics that cause her to blurt out inappropriate words is yelled at by someone with no such disability. Get it? A ‘‘normal’’ person chooses to direct an angry outburst at someone doing something caused by a neurological condition beyond her control. It’s like a librarian yelling ‘‘Quiet!’’ at a child who accidentally drops a book. Ludicrous. Disturbing.
But that is Jade O’Connell’s experience.
The 19-year-old Dunedin woman, who has Tourette syndrome, has had that reaction more than once.
‘‘They’ll get defensive and actually yell at you,’’ Jade says of people’s behaviour since an uninvited surge in her incurable brain condition manifest a couple of years ago.
‘‘And you try to explain, just so they can understand it, and they yell some more.’’
It means she rarely goes out alone.
But being the object of ignorant abuse and unfair treatment - in October Jade was barred from a flight to Wellington until she furnished a medical certificate related to her Tourette’s - is not all there is to this intelligent and determined young woman.
She has reached the one million milestone for followers on social media platform TikTok. Jade uses that platform, and others, to share about her life and educate about Tourette’s.
With so many followers, garnered in just a few months, she is starting to earn an income through online content creation.
‘‘The online response has been great. I mean, I’m now able to make a job out of this,’’ Jade, who has had to leave three jobs because of people’s reactions to her condition, says.
‘‘It’s also helped me be more confident and more accepting of the Tourette’s.’’
As the campaign for human rights, kindness, common courtesy -call it what you want -continues, a new term is coming in to everyday use: neurodiversity. It’s an umbrella term for a group of people -possibly far larger than many realise -who are battling prejudice, exclusion and self-doubt when all they want is something worthwhile to do and the same chance as everyone else to fully participate in society.
Neurodiversity is a condition that affects the way people perceive and understand the world, Dr Hilary Stace says.
The word was apparently coined in the late-1990s by Australian sociologist Judy Singer, who recognised there was variation in the way people, using senses, saw and interacted with the world. The autism spectrum, in all its diversity, is probably the best known example of neurodiversity, Dr Stace, a Victoria University of Wellington disability researcher says.
The term covers not only autism but attention deficit hyperactivity disorder (ADHD), foetal alcohol spectrum disorder (FASD) and dyslexia. It can also include dyspraxia, Tourette syndrome, obsessive compulsive disorder (OCD), dyscalculia and intellectual disability (now more often called learning disability or learning differences).
Neurodiverse people most often have these differences from birth, but they can be acquired through a health condition or even injury.
The term does not include standard physical impairments such as blindness and deafness -the sorts of conditions the Ministry of Health has traditionally recognised and funded.
It is not known how many New Zealanders fit under the neurodiverse umbrella.
That is because neurodiversity research is still an evolving discipline and because Statistics New Zealand uses disability questions in its surveys that are not designed to identify neurodiversity, Sam Murray says.
Murray, a senior policy analyst at CCS Disability Action’s Dunedin-based national office, has, however, had a go at putting a number on it. Using the nationwide 2013 Disability Survey, which asked more helpful neurodiversity-related questions than later surveys, his best guess is that 7% to 10% of all New Zealand children are neurodiverse. That is between 71,000 and 102,000 neurodiverse Kiwi children, let alone adults.
‘‘That said ... neurodiversity is a developing area, so maybe that estimate is too low,’’ Murray says.
Jade was shy growing up, her mum, Teresa O’Connell, says. Apart from that, she seemed a fairly normal, bright kid.
But about three years ago, Jade started developing more obvious Tourette’s symptoms -involuntary movements, touching objects and people, and involuntary sounds and words including swearing and name-calling.
‘‘When she knows she’s tic-ing she won’t leave the house,’’ Teresa says.
‘‘Watching her going through those struggles has been really hard.’’
‘‘Especially when it wasn’t diagnosed and we didn’t know what was going on,’’ adds Jade’s dad Jason O’Connell.
The Tourette’s diagnosis, formalised about a year ago, has helped Jade and her family understand and accept her neurological condition.
‘‘But it’s still bloody hard on the girl,’’ Jason says.
Teresa’s biggest wish is that their daughter is not singled out or treated as disabled.
‘‘She’s not contagious. It’s not a disease. It’s a syndrome. She’s really clever. She’s just been dealt a bum deal.’’
Teresa’s concern begs the question, what is the relationship between neurodiversity and disability?
The two terms reflect different worldviews, Joanne Dacombe says.
Dacombe, who is autistic, serves on the boards of Autism New Zealand and the Disabled Persons Assembly (DPA), among others, and although based in Wellington, is a part-time autism researcher with the University of Otago.
She says neurodiversity fits with a social model of disability, viewing brain differences as normal.
‘‘Neurodiversity is viewed as ... a variation of human wiring, rather than a disease.’’
In contrast, the more traditional medical model views impairment as something that needs to be treated, cured or contained.
Seen through the social model lens, the disability a person experiences is caused by a disabling society that prevents full participation.
Within the social model there are nuances. Some see their differences as their identity, while others prefer terms that put the focus on everyone’s common humanity -for example, autistic versus person with autism.
‘‘Autistics, particularly adults, prefer identity-first language ... as they embrace their differences and don’t see them as deficits,’’ Dacombe says.
Some, like Jade’s parents, had not heard of the term neurodiverse but definitely do not see their daughter as disabled. Others, like Peter Lim and his mother Tongsiew Ooi, embrace both terms.
Peter loves newspapers, specifically the Otago Daily Times, especially vintage editions of New Zealand’s oldest surviving newspaper.
He also has an incredible head for numerical patterns.
Peter was about 8 years old when he broke the code that correlates date of birth with days of the week. Tell him when you were born and he will tell you whether it was a Saturday or a Tuesday.
His twin brother Andrew Lim, who has Asperger’s, is completing his PhD in politics at the University of Auckland. But Peter’s autism and anxiety make tertiary study unsustainable.
Instead, for the past five years, in addition to his copious library time -as well as pursuing his own interests he helps convert the public library’s handwritten newspaper index to a digital format -Peter has poured his enormous capacity for concentrated, precise, continuous work into data harvesting and data entry for a local real estate firm.
But during the Covid-19 lockdown, the firm reluctantly let Peter go. He has been at a loose end ever since.
‘‘I felt sad and unsettled,’’ Peter says.
‘‘I want to work, to get paid and to help keep me occupied. But it’s very hard for people with intellectual disabilities and high-functioning autism to find work.’’
Peter’s mother is upset and frustrated for her son.
‘‘He works so hard. He can’t lie. He is the most loyal and hardworking staff member you could have. It’s affected his self-worth and sense of dignity.’’
He receives a disability living allowance. But people need more than money, Ooi says.
‘‘They need to feel useful, needed. He sees other people able to work and contribute and he can’t, and it really affects him as a person.’’
Neurodivergent people struggle with a range of disabling practices and attitudes they regularly encounter, Dacombe says from personal experience.
‘‘Many of us have stories of active discrimination and being treated differently.’’
She says ‘‘ableism’’ in society stretches from a lack of understanding of neurodiversity by government departments and the media to a lack of disability representation in Parliament and a lack of support for navigating and participating in education, health and employment.
‘‘We have differences but don’t need to be viewed as less than someone who is not neurodivergent ... Look at us with a view to understand and support,’’ Dacombe says.
Dr Stace says the government also has an important and concrete role to play.
All articles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which New Zealand has signed up to, need to be implemented, she says.
Despite a government committee inquiry into education and disability, which reported back in 2016, access to diagnosis and support is still difficult for many neurodiverse people.
The Ministry of Education’s Learning Support Action Plan, which is under way, should meet the needs of every child and help each of them meet their potential, Dr Stace says.
She says health is not the right place for disability.
‘‘Disability needs its own ministry, which would cover all the diverse aspects of disability regardless of the cause or the level of support needed, including education, health, independent living, employment and ageing.’’
‘‘This means that services and support become personalised and driven by the disabled person’s unique circumstances, their impairment and aspirations,’’ Sepuloni said in an emailed response.
New legislation and policy decisions are formulated to meet UNCRPD expectations, she says.
Sepuloni says the Ministry of Social Development is looking at proposals to deliver services more flexibly.
One of the projects will improve health outcomes and access to health services for disabled people, including neurodiverse people.
‘‘There remains a strong commitment to accelerating accessibility in New Zealand ... including the needs of those with neurodiversity.’’
There is a lot government and the public still need to do if they are to get their heads around neurodiversity. Information that could spur some important elements of that shift will come from research still being conducted, a chunk of it in Dunedin.
Nick Bowden is a research fellow at the University of Otago. He is using information from New Zealand’s Integrated Data Infrastructure -a large, anonymised research database of information on individuals drawn from several government departments and surveys -to research neurodiversity and its impact on wellbeing.
Bowden describes his work as social science research with a focus on understanding the lives and challenges of those with neuro-impairments.
‘‘And ultimately helping to improve their lives and the lives of their whanau,’’ Bowden says.
‘‘The IDI is a resource that few people are using and we have really only scraped the surface of it at this stage.’’
Jade just hopes greater awareness and acceptance of neurodiversity comes quickly.
‘‘Then I wouldn’t get as many of those bad reactions in public -people would be more understanding ... And it would help us find ways to make it better.’’