How would you feel if you got a dream job opportunity working in a restaurant, but your parents don’t let you take it because they’re scared you might hurt yourself with a steak knife?
This is a reality that people with disabilities, especially intellectual disabilities, often face as their parents or carers struggle to let them go – often out of the love-fuelled fear that harm will come to them.
“Most people with a disability are more ready to be let go of than their parents are ready to let go of them,” says Anne-Marie Callus, senior lecturer within the Department of Disability Studies, Faculty for Social Wellbeing, at the University of Malta.
She will be presenting findings of research on overprotection – carried out together with Isabel Bonello from the Commission of the Rights of Persons with Disability (CRPD) – during a conference titled ‘Protect and Let Go’.
During the conference, on October 19 between 9am and 1pm, parents of people with a disability will also be presented with the voices of people with disabilities as collected during a workshop held in July.
We want to be like homing pigeons… to go out knowing there’s a place where we are cared for
Currently there are 19,261 people with a disability registered with the CRPD – of which 3,323 have a registered intellectual disability.
“Parents have a lot of justifiable concerns when it comes to letting go of their children – including adult children.
“But there is this misconception that you either protect your disabled children or you let them go. In reality, you can do both with the right support,” says Dr Callus.
She recalls one mother telling her how hard it was to let her daughter go to the grocer alone. The mother was petrified that her daughter would be made fun of or given the wrong change. But all went well.
“Parents are facing a lot, and their concerns are legitimate. They just need support to get to that stage when they let go within a structure that still offers protection,” she says as she goes on to give a few examples.
So, for instance, the parents of a person with an intellectual disability – who were scared to let him catch a bus alone because he might get distracted and lost – organise transport for their child and allow him to go out with friends.
One parent, who feared her child would be given the wrong change, created a system that organises money in a coded way – from most to least value.
“You can’t help the emotions you have. It’s what you do with that emotion that matters. So parents can’t help worrying, but it’s what you do with that worry and fear. Do you keep your children close to you and not let them out because of something that might happen? Or create a structure that allows them liberty in a safe way.”
Living their own life
The starting point, she stresses, has to be listening to what the children want from life.
“There is a misconception that people with intellectual disabilities don’t know any better. That they don’t know what they’re missing. But this is not the case.”
Nowadays, there are a lot of services available. Most people with intellectual disabilities go to mainstream schools and have post-secondary education and employment opportunities as well as day centres and day services.
“There is a lot, but we’re always fitting the person into an existing structure rather than starting with what they want to do with their life. It’s good but not good enough.
“We need to start from what the person wants – their aspirations and needs – and then see what they need to reach those aspirations and meet their needs.”
There are things they can learn and some things they will always need support with, Dr Callus says as she goes on to quote a description drawn by a person with a disability who once told her: “We want to be like homing pigeons, not like an eagle souring high and free. We want to have a home and have people to take care of us, but we also want to be able to go out and about knowing there’s a place we can return to… where we are cared for.”
For more information about the conference, organised by the Faculty for Social Wellbeing and the CRPD, visit https://www.facebook.com/events/2330997593784152/ The conference is free. Registration closes tomorrow and can be done online https://forms.gle/WXDAmJR3XK1jm3i26.
“Mum doesn’t listen” – voices of persons with disabilities*
“My mum might as well hand me a nun’s outfit. She picks clothes for me to wear every day. Even when going out shopping for new clothes, she always insists on choosing them for me. It’s not the first time we argue over this, but she doesn’t listen.”
“My parents discourage me from going to work. They used to tell me that there are people out there who will make fun of me or take advantage of me… I’m too scared to look for a job, even though staying at home is so boring.”
“My parents went ballistic when I moved out of their home to live on my own. I had support from various entities to enhance my independent living skills. I’ve been living alone for over five years now and my parents accepted it.”
*Quotes taken from workshop organised by the CRPD.