Posted by Allison Hammond on Tuesday, November 5, 2013
There have been a number of newspaper articles recently about the mother who allegedly attempted to kill her child with autism and herself. Scott Shrum, Executive Director of Residential Opportunities, Inc., which operates the Great Lakes Center for Autism Treatment and Research, also wrote a Guest Column in the Kalamazoo Gazette about the impact on families that have a member with autism, or perhaps a related disability.
I am familiar with similar stories of families under significant stress, as well as families whose lives have been greatly enriched because of a son or daughter or sibling with a whole variety of disabilities. None of these families are heroes, nor would they purport to be. They are usually people doing their best for their family.
In our current work the focus is on what the whole community, beyond the immediate family and the specialized services for people with disabilities can do to support the individual and the family. On a very personal level, think of a time in a grocery store when a child has made loud, objectionable noises and you immediately condemned its parent for not making the child stop. What if that mother or dad cannot make the child stop, and the child has become so overly stimulated in that environment that she cannot stop herself? And what if that parent cannot just abruptly leave without purchasing the groceries?
What might you do? Perhaps help out, though you would probably not know what to do . We all could refrain from looking at the parent and child as if they have no right to be there. Don’t judge the parent without knowing more about the child. With some effort, perhaps, we can all do that. Observe closely and try to understand the possible reasons for the child’s behavior. With some patience and practice we can do that.
We probably will never reach a stage where as a community we would fully welcome a screaming child in a grocery store, but imagine much better that parent, and perhaps that child, would feel about themselves if we let them know that the community is for them and not against them. In my conversations with parents they talk about what a difference it would make if others of us acknowledged their child and validated them, even when their behavior is different and even hard to take.
Posted by Allison Hammond on Tuesday, October 29, 2013
This article is one of a series commenting on current stories in the news.
From the Kalamazoo Gazette
A recent story was on the front page with the title ‘Blurring Boundaries’. It was about a program at Portage Central High School in which students with autism socialize with other ‘normal’ students. It is similar to many programs I have observed and heard about over the years. To the extent that they foster good experiences and lead to some kinds of ongoing relationships these programs have value.
What struck me about this story was the awkward effort to distinguish between students with labels and those without labels. The use of parentheses lets the reader know that the writer is aware that the term ‘normal’ is not the best choice, but it also reveals that the writer does not really know how to talk about the differences between the ‘mentor’ and the ‘mentee’.
The use of the term, normal, is not new. It has some technical standing in the disability field that goes back at least as far as the 1960’s when the term, ‘normalization’, was borrowed from the Scandinavian countries. It pointed to efforts to develop programs for people with disabilities using methods that were as much like the experiences of people without disabilities, the ‘normal people’, as it was possible given the degree of the disability of the person in the programs.
The principle of Normalization has been beneficial in many ways. It has led to better treatment. It has provided professionals with standards far more benevolent than those that guided practices prior to the ‘60’s. Yet, what about the awkwardness? We have always known that there is something wrong with referring to a group of people as something other than ‘normal’. Yet, we shrug and add a phrase like ‘so called’ in front of ‘normal’. How to do better?
I think that the answer is just to say that everyone is normal, thereby robbing the term of any practical use and allowing it to eventually be dropped from our vocabulary. Let it go the way of ‘outhouse’, which we don’t need anymore either.
Let’s just call people by their given names and if we have to use language to differentiate talk about the kind of support that person needs to take part in the same environments and in the same ways that we all do. Furthermore, let’s stop ‘treating’ people as a group, as if by grouping them we can actually make them all the same. Let’s ‘blur the boundaries’ to the point where they disappear.
Posted by Allison Hammond on Tuesday, October 22, 2013
Jack is a young man who started volunteering at the Kalamazoo Nature Center and he uses American Sign Language to communicate. In this situation, everyone is in partnership. Jack is learning how to communicate without an interpreter. The Kalamazoo Nature Center staff is learning sign language from him. This is a mutually beneficial opportunity for everyone. Jack is openly welcomed, supported and respected at The Nature Center.
When I first met Jack, there was a sign language interpreter present. I learned that Jack likes art and nature. I offered to take him to visit the Nature Center to discover what opportunities there might be for him.
The day I took Jack to the Nature Center, I was nervous because the interpreter was not available. I am a novice in sign language pretty much only knowing how to finger spell. Jack was very patient with me and when I would start to spell a word he would show me the sign. That day I learned the signs for spider, chipmunk, snake and tree to name a few. We also had a pad of paper nearby so that we could also write words. Working together, Jack and I were able to communicate with the volunteer coordinator what his interests were and where he might share his skills in their organization.
Jack is volunteering as a support to the staff in the copy room and putting together educational materials for the school outreach program. In addition, once the Experiential Education Director saw an example of a turtle Jack had created with pastels, he wanted to have Jack help him create and paint props that are used in the school outreach program.
Jack no longer needs an interpreter with him as he volunteers. In addition to helping the Nature Center staff use some sign language, he also uses an iPod Touch text to speech program. He is really enjoying meeting new people and The Nature Center staff really value him being part of their team.
Posted by Allison Hammond on Tuesday, October 15, 2013
The blog this week was written by Wendy Hutchison, a Community Broker at The Arcadia Institute.
I am a new member to the team at the Arcadia Institute. When I was planning to join this organization in July, I read their Mission Statement: Making it possible for people with disabilities to be welcomed, supported and respected in their community. This mission not only sounded inviting and friendly, it made me want to be a part of this organization.
I decided to look up the definitions of welcomed, supported and respected.
~ welcomed — meet or receive with pleasure
~ supported — to maintain by supplying with things necessary for existence
~ respected — esteem for or sense of the worth or excellence of a person
It is difficult to separate these three, they seem to compliment each other and together become a package with which we treat others. I remember the saying my parents always told me as a child: treat others as you would like to be treated. This seemed so obvious and simple. There are so many things we take for granted on a daily basis, ways of life that just seem common sense…like treating someone with respect and welcoming and supporting them. These are things we do for our friends, neighbors, family and even people we merely encounter at the grocery store and at the gym. We smile as we pass strangers and open a door for a senior. It seems natural that we would treat everyone in a welcoming manner, to support them and respect them, regardless if they have a disability. The truth is that many of us have some struggles in life; whether it is physical, mental, emotional, learning or social. Most of these are invisible to the human eye.
In my first couple months, I have witnessed and experienced this mission through the words and actions of my co-workers, with everyone they encounter. And the welcoming, supporting and respect is individualized if necessary to make the communication understood and real. For some, it is simple and immediate, for others it requires a little bit of trust from both sides to make it real. but the effort is there. This may be a result of individuals not grown up or always experienced being welcomed, supported and respected by others.
Welcoming, supporting and respecting come with greater ease in a small community. A community of family, school, church or maybe neighborhood. The challenge and work comes with expanding that to the entire community with which individuals live and contribute; new places an individual may experience. As we continue to pursue our mission, hopefully we will make it something every person, with both disabilities and abilities, can feel is a part of every day and one day take for granted.
Posted by Allison Hammond on Tuesday, October 8, 2013
The blog this week was written by George T. Martin, President of The Arcadia Institute.
This current economic downturn has provided us with ample evidence that our status in life can change quickly. We can lose our homes, our livelihoods, and then our standing among our relationships. We may have to receive unemployment compensation or even some form of support like food stamps. The welcome we get, if we get it, is altered. We bear a kind of stigma. We have had to receive this outside help. It does not matter that this support is made available to us through a due process of law. Our status can change even without a negative shift in our health. People don’t regard us in exactly the same way, subtle though the change may be.
Anyone who has had to receive any kind of defined assistance through public funds can tell you that you rarely get welcomed, supported and respected when you get help. Yet, very few of us have been able to get where we are in life without some form of public support. People receiving such support have to meet eligibility criteria which usually carry some kind of stigma.
We know from experience that we can only get beyond stigmas placed on any group of people among us is by getting to know a person in that group as an individual. We know someone as John, rather than John who has been institutionalized in some way. Then we can see John as we see ourselves.
Once John and I enter into a relationship, we form community. Each of us is equal to each other as a human being. We may have different attributes or talents, but the relationship gives each of us the same standing in life, even if our current status may be different. If John should happen to get laid off from his job and have to receive unemployment compensation, he is no different. Yet, those of us around him may treat him differently. Because he has to receive this organized support, that is public in nature, he can gradually become less in our eyes. We don’t welcome him among us in the same way. Our respect is tempered by that slight change in John’s status. We have to learn to continue to affirm that community we share, regardless of any status shift.
We have to reach some kind of basic understanding that John is like us, his external standing in the world does not alter that basic commonality. Without that bedrock common ground our humanity is dependent on factors sometimes beyond our control. As a basic human right being welcomed, supported and respected have to be accorded, regardless of any shift in our standing in life.
Some people are one paycheck away from being homeless. How would it affect your ‘bedrock’ status and change your self-perception if that someone were you?