Page 17 - Community Living Magazine 34-2

in conversation

Silence on subtle abuse Getting her
She tells me that, while the world is often life back in
shocked by examples of more extreme Nigeria,
abuse such as people being assaulted, where she felt
low-key abuse can be just as damaging. better “as if
“The subtle words dripped in ears. And by magic”;
that stuff doesn’t get seen,” she recalls. inset: on the
run on the
She adds that her crucial, calming ferry to
half-hour of outdoor leave could be taken France
away by staff saying: “I can’t be bothered
to go out for a walk today, you are not
having your half-hour.”
She says: “Just being in hospital is
torture. The closed doors deny our right
to express ourselves and remove our right
to a family life.
“The system is abusive. If we need help,
it should be in single-occupancy crisis
housing that is homely and tailored to our
specific needs.”
On top of all this is the amount of
medication used: “All the drugs that you She is very aware, however, that nearly She now believes that people with
are forced to take – I was on 14 tablets a a decade after the Winterbourne View autism need a Pride movement of their
day. That is abuse.” scandal, thousands of people are still own: “What I mean is that we accept
Quinn was expected to practise stuck in the system. ourselves for who we are, and we are
everyday living activities such as washing proud of ourselves, and we are proud of
and folding clothes, which she found Stuck in one story the way we socialise autistically, we are
difficult. It went further: “We have to Quinn was inspired by a talk given by proud of the way we communicate, and
pretend to be neurotypical to earn Chimamanda Ngozi Adichie (the Nigerian we are proud enough to advocate for
rewards like going outside. We have to author of Half Of A Yellow Sun) about the ourselves and not hide away.”
pretend to be something that we are not. danger of “a single story”. Adichie said
These systems are draconian and have no that if you show a person as simply one
place in our society.” thing over and over again, that is what This was the beginning of
She does think that there is a growing they become.
swell of opinion against the use of For Quinn, this helped to explain how three and a half years in
restrictive practice and behaviourist the continually repeated “story” that she 12 institutions that cost the
methods of control. was mentally ill had prevented her from NHS an estimated £2.5 million
“Back then, it wasn’t seen as a human understanding sooner that she was simply
rights violation. I was saying this stuff and an autistic person in a completely
people were laughing. Things are unsuitable environment.
changing very slowly but, first of all, Quinn is writing a second book, this Quinn says that she does understand
people’s mindsets have to change.” time about autism and pregnancy. She that autism can be difficult “but it is
tells me that when she googled “autism difficult because what we value in society
and pregnancy”, nothing came up. and the way we organise our environment
“Autistic women have no role models makes it difficult. The environment I was
for pregnancy. I think it’s really sad. When forced to live in nearly killed me – more
I had my daughter, I didn’t know what to than once.”
expect,” she says. So, Quinn has now settled happily
With her second child, Quinn hired a overseas. She feels lucky to have got out
solicitor to fight for reasonable of the system and is working to help make
adjustments during childbirth. Quinn changes happen so others do not remain
wants autistic women to know the trapped. She has a good job and can
options that are available and that they afford support staff to take care of the
have a right to family life. “It is totally fine things she struggles with.
that we procreate,” she says. “I still can’t fold up clothes, cook dinner
When she was pregnant with her son, or clean. I can put on a nappy but I still
she joined an online parent forum. The can’t fold up clothes. And that’s fine,” she
experience showed how much parents laughs. “I’ll survive.” n
feared having a child with autism. ● Alexis Quinn’s open letter to CQC is on
She says: “Parents are petrified that the Rightful Lives blog at https://tinyurl.
their children might have autism. But, you com/y29mgocj
know, each of us have a life worth living. ● Unbroken: Learning to Live Beyond
We are human too! Let’s stop Diagnosis is published by Trigger
Finally free: Quinn out with her two children marginalising difference.” Publishing (2018)
www.cl-initiatives.co.uk Community Living Vol 34 No 2 | Winter 2021 17