Last Fall I had the pleasure of hosting a discussion with a group of families. We talked about how the government can make communication more accessible to people with an intellectual disability and their families. We talked about using clear, simple language. We talked about offering information in multiple formats like video, audio, and Easy Read documents. We talked about having guides that families, support workers, and people with disabilities can use together.
Then a parent asked some important questions:
What about someone who doesn’t read? Or someone who doesn’t understand a video? Or someone who doesn’t communicate with words or signed languages? How do these recommendations include them?
The conversation that followed was wonderful. It was an honour to listen to these families talk about what meaningful participation means to them, particularly when their loved one experiences barriers to communication. I’d like to share some of the things that stuck with me.
What is Meaningful Participation?
“Meaningful participation” is what happens when people with intellectual disabilities get everything they need to be fully included, participate equally, and feel valued. – Listen Include Respect
Listen Include Respect are international guidelines written with the help of over 1,500 people with an intellectual disability and their families. They came from almost 100 countries.
Don’t assume that someone does not understand
Just because someone doesn’t communicate with words or signed languages, doesn’t mean that they don’t understand. Family members were clear that their loved one communicates their approval or displeasure in many ways. This includes noises, eye movements, and body language. Someone who knows the person well can help interpret their communication.
Assistive technology has come a long way
In the past, people who experienced barriers to communication had fewer tools available to them. Today, there are many types of assistive and augmentative technology that can help people communicate and connect with others. Despite these advances, accessing funding for technology can still be a barrier. This prevents people from communicating freely.
Meaningful participation does not require the ability to speak, read, or write
As adults, it’s our right to be involved in decisions that impact our lives. This is equally true for people who experience barriers to communication. Family members explained that meaningful participation looks different from person to person. At the very least, it involves explaining what you are doing on behalf of the person with a disability, and how it will impact their life. For others, it might mean giving them all the details and involving them in every step of the process.
One family explained it this way. They could assume that their daughter can’t understand anything financial and leave her out of the process. Instead, the parent explains what they are going to do and why. They tell their daughter that they are going to fill out papers to help her save more money. This money can be used to live a good life. It can help pay for things like food and rent. Will their daughter understand? Her parent may never know for sure. But they are confident about treating their daughter as a capable adult who deserves dignity and respect.
Wouldn’t you want to know if someone was making decisions about your life?
Support workers need values-based training
Many families spend years advocating for the rights of their loved one with an intellectual disability. They have fought so that their family member can meaningfully participate in everyday things like school, sports, and work. They do this because they believe everyone has a right to a good life. It is important to support their loved ones to decide what that good life looks like. Families have had a lifetime to learn the values and skills needed to assist with supported decision-making.
Support workers are trained to meet the physical needs of the people they assist. They rarely receive values-based training to understand the importance of decision-making in the lives of people with disabilities. Training about how to support that decision-making process is also rare.
One family explained this beautifully. A support worker without values-based training may receive a voting card in the mail for a person with a disability that they support. They assume the person can’t participate in political life and throw the voting card in the garbage. A support worker with valued-based training understands that people with disabilities have a right to participate in political life. And that they can have support and accommodations to make this possible. They assist the person to vote.
Which support worker would you want?
This shared experience with families was a wonderful reminder that everyone can meaningfully participate. It’s up to us to examine our limiting beliefs and assumptions.
