The speaker on the second day was Kirk Hinleman and he has authored a book called Intentional Teaming. His goal is to move from system-centered thinking to a citizen-centered presence. That it was all well and good that we removed these people from an institution, but now we must move them out of their houses and into the community.
In 1983 Wolf Wolfensberg came up with the Social Role Valorization theory. This theory states that society tends to determine people to be of less value based on a label of disability, perceived ability, and lack of contribution to society.
Although we have come a long way from institutions we still do this today. We see those with disabilities as “other” and assume that they aren’t contributing members of our society. We keep them on the outskirts of society. I know from my personal experience that this still happens in the autism community. Places have “sensory hours” for children with autism, where the lights are dimmed, the music is lowered, the general public isn’t allowed in… but why should our children be confined to interact within our society only on certain days, and during certain times. Why can’t the conditions for them, low light, low sound, just be the norm? How do we move them into the center of society and not leave them on the outskirts?
So what is the Safe-Center of society and how can we move our children into it?
Kirk explained that there are 5 valued experiences to gain membership into the Safe-Center:
- Being Respected
- Sharing Ordinary Places
In order to enter the Safe-Center we must have:
- Community Participation
- A Valued Social Role
- Community Presence
He challenged us to look at how people with disabilities are treated by those who provide them services. Are they building meaningful relationships with them? Are they just covering the time? How are they supporting them? What kind of support do our children have?
Let’s look at different circles of support:
- Intimacy: people you couldn’t live life without
- Friendship- didn’t make the cut for circle one
- Participation- People you see in particular places- the gateway to circle 2
- Economic exchange- goods and services
When we look at who we surround our children with we tend to surround them with people in circle 4. Therapists, doctors, more therapists. All that time is time well spent but it is also time we take away from them engaging with peers. If participation in things: scouting, club sports, music classes are the gateway to meaningful relationships isn’t that where we should focus to put our children. That we as parents should think about how we move them closer to their peers. So that those peers can become friends- so that our children build deep meaningful relationships with people who are not being paid to be a part of their lives.
It has certainly changed my way of thinking and will alter how my children’s therapies will be done in the future and will change the types of activities I involve them in.
If you are a parent of a special needs child I hope that this has also got you thinking about who surrounds your children, and how we can build more meaningful relations for them within the community around them.
“Loneliness is the central reason why so many are unhappy and distraught.
Our work is to help people find meaningful and enduring relationships.
Nothing is more important.” David Pitonyak
Just some food for though. Parents of special needs children also need to re-enter the Safe-Center of community. So very often we feel as though we no longer belong, we are no longer respected (we have the bad, unruly kids), we no longer share ordinary places (we literally stop going out in public), we stop contributing (we quit our jobs, put our hopes and dreams on hold for our children), and we feel like we no longer have a choice in what our future looks like.
If you know a special needs mom please re-read that. The same things that stop our children from entering the safe-center also stops us from doing the same, we need to change the way we do things for them, but also for ourselves, and our own mental health. If you know someone raising a special needs child take a minute and think about how you can help that person get to the Safe-Center of community. If you see a mom out an about and she is having a hard time with her child, ask her if she is okay, ask her if she needs help. You have no idea how much this means to us and makes us feel like we are welcome in those shared spaces.