Sometimes amazing, beautiful, wonderful, well-intentioned humans can do some not so good things without intending to that have bad outcomes for people with disability. Even us parents who love our disabled kids dearly do and we don’t even realise it.
We’ve grown up learning our beliefs about people with disability from the people around us – our parents and our peers and we may not even be aware of these beliefs.
I remember walking to school behind a group of kids who started teasing a young girl with a disability that was walking ahead on her way to the special school over the road from my school.
I remember thinking that it seems like people with disability are not liked or welcomed in our community and that they also have to go to special schools and can’t attend ordinary ones. Thankfully I had others around me to counteract those beliefs.
As Tim Minchin says – it’s important to question everything. To take our beliefs out on to the verandah and hit them with a cricket bat.
So it’s important that we check in regularly about our assumptions and beliefs so that we can avoid doing unintentional harm to our family members with disability. It’s also important for circle of support members and paid support workers to do the same.
In this blog article I’ll share some values and principles I’ve tried to follow to help me build a good life for my son Isaac.
You cannot assume that someone cannot make a decision for themselves or achieve a goal just because they have a particular medical condition or disability. We assume capacity unless it is proved otherwise because if we don’t do this it can lead us to not providing opportunities for our sons and daughters to learn and grow.
Now assuming capacity doesn’t mean throwing people into risky situations. Now we don’t throw children into a pool and assume that they’ll be able to suddenly swim. Do we? We do it slowly and carefully. But we begin with the assumption that they can learn to swim, and that they might enjoy swimming. So we give them the opportunity to learn it. And we do that by giving them all sorts of flotation aids and swimming lessons and practice and time.
So we parents and the supporters of our family members with disability need to
- Be mindful of the limitations your own mindset might be putting on our family member with a disability
- Observe closely for signs of understanding and capacity
- Provide opportunities to help them learn – even if this is harder and takes longer
- Dig deeper and get creative around ways to help them learn in alternative ways
The Dignity of Risk
This is where we aim to keep the person with disability in our lives safe, but not at all costs.
People with disability have the right to take risks when engaging in life experiences, and the right to fail in taking these. They have the right to build their own lives in accordance with their own values and their own personality.
Being afforded the dignity of risk gives people with disability a sense of being in control of their own life, and give them feelings of worth. The opposite to this is overprotection. That can make you feel really patronized, and smothered, and without hope.
We need to ask ourselves if it all goes well, what would be the benefits?
If we don’t do this, what might they miss out on?
What could go wrong, and how likely is it that these things could go wrong?
How serious would be the impact if things did go wrong? Perhaps the impact might not be so catastrophic.
Can we do anything to reduce the risks without denying our family member with a disability the opportunity to do an activity they choose to do?
Inclusion word is bantered about a lot, especially in the media. The definition is not quite understood and that can be a bit damaging because groups of people think they’re being inclusive when they’re actually not. Instead, they’re perpetuating the idea that people with disability only belong in separate and segregated settings.
So what is inclusion? Well, I like this definition…..
Inclusion is when individuals can access people, places, things, and experiences in the ordinary environment, which is used by other members of the community, and they are welcomed and valued.
Finding opportunities for our family members with disability to be truly included in our community can be really challenging. I’ve certainly found it hard. But if we don’t try, and we stick to only hanging out in the disability community, we can deny our family members opportunities to learn and belong. We are also denying the community the opportunity to learn to be more inclusive.
Reciprocity in a relationship is where each person gives to the other in some way. It’s not all just give and its not all just take. That can be challenging for people with disability, especially if they have difficulty communicating.
Identify and facilitate opportunities for the person you support to give back to the people in their social networks
We need to focus on helping our family members to give and share….
- birthday cards
- do favours
- share belongings
Person Centred Planning
As a person who doesn’t have a disability, I pretty much get to choose what I want to do all day every day. But people with disability often need to rely on others to help them and to help make their preferences known to others. And they’re quite vulnerable to people making decisions for them based on what they think is best for them rather than what the person themselves really wants or really feels that they need.
Person centred planning helps us to recognise what is important to and for the person and to create good lives based around what they want rather than what we think it best.
Social Role Valorisation
In all cultures, for whatever reason, some things seem to be valued more highly than others. Things like wealth, beauty and intelligence are highly valued. Whereas, poverty, ugliness and low intellect are devalued.
Groups of people can be devalued too. People who are poor, homeless and have a mental illness or a disability, and so on, tend to be devalued. And you know what? That’s really wrong.
So one thing we can do is to advocate for these devalued groups in order to bring about more acceptance, but that’s a very slow process. Our culture doesn’t change overnight. It can take generations to change.
So in addition to advocating, an extra strategy we can harness is something called social role valorisation. The basic premise of this is that people who hold valued social roles are more readily afforded for good things in life.
I’m a mother, a business owner, a wife. I’m the household bookkeeper at our house. I clean the bathroom at our house. I’m also a board member. I’m an artist. I’m a former teacher. I’m a university graduate. I’m a Canberra Raiders supporter and a cyclist.
So if I look at the role I have as a mother, this has given me opportunities to make more friends through things like mother’s groups. I’ve learned some new skills about caring for children and problem-solving. It led to me becoming a volunteer playgroup leader and a volunteer cricket scorer. I got to go on a scout camp.
So the more valued roles a person has, the more likely the person is to get the good things in life. They can bring you self worth, fun, friends, learning skills, opportunities for more roles. The good life.
People with disability are often placed in devalued roles, things like the eternal child, never growing up or as childlike, objects of charity or pity, a burden on our society and criminals.
So if we can craft valued roles for our family members that have a disability, then we increase their chances of belonging.
Isaac has held the valued role of being a delivery man now for over 5 years. He can do the tasks of being a delivery man with skill. He looks like other delivery men in his uniform. He knows the language of delivering.
His delivery man role has brought him respect and friendships and he is missed when he is away.
Want to learn more?
Sign yourself and your team members up for the Values and Principles for Supports online learning course below – It’s Free!