Sharing Our Bite Of The Big Apple: Report From The YAI Conference

As described in a previous news story 10/11 members of the LiveWorkPlay full-time staff team spent time in New York City for a staff retreat combined with attending and presenting at the YAI International Conference that featured a theme of neurodiversity. What does neurodiversity mean?

Neurodiversity is the acceptance and embrace of people with cognitive differences. It is an idea whose time has come. The sudden prominence of this term is an indication of how rapidly our field is evolving and how dramatically parents and practitioners are shaping the public dialogue. What these change agents have in common is a determination to open minds long closed to the potentials and possibilities of people once dismissed because of their differentness.

The YAI Network alone has a staff of more than 5000 and serves more than 20000 individuals. Taking part in in a conference of this scale offers interesting opportunities to see how LiveWorkPlay matches up to what others are doing around the world, and it is also a chance for us to share with others and receive feedback.

The LiveWorkPlay presentation “From social programs to social change: building a welcoming community” on May 7 was very well attended and a few latecomers ended up sitting on the floor at the back. The general feedback on why people decided to attend was that the shift we have made together over the past five years – away from systems solutions to community solutions – is a challenge that many agencies either want to take on in the near future, or they are already immersed in making it happen. The discussion is not unlike our ongoing collaboration with The Mills and like-minded partners.

Before we left for the conference, we promised to share some of what we learned on our return. Here’s a summary.

Keynote speaker Jonathan Mooney struck a cord with his warning about “the soft bigotry of lowered expectations.” Jonathan was talking about how people get labeled with (for example) an intellectual disability because the diagnosis is supposed to bring them help to be successful. However, what happens in reality is the help they receive often comes with a decision that is made on their behalf that they will not take part in community life, or that they will take part only in segregated or “special” ways.

This way of thinking has to do with the legacy of “remediation” as an approach to disability. This is a medical model whereby the person with a disability is believed to have problems that must be fixed or reduced in order for them to have success. Jonathan urged everyone to move beyond remediation and to learn to respect and appreciate the value of people with cognitive differences. At LiveWorkPlay it is our mission to help the community welcome people with intellectual disabilities to live, work, and play as valued citizens, so this message definitely resonated.

We see the soft bigotry of lowered expectations applied on a routine and daily basis. On a systems level it is the reason that special education, group homes, and day programs remain the predominant destination for people with intellectual disabilities in terms of where they live and how they spend their time. This requires two insidious assumptions: 1) that the individual cannot and should not experience the community beyond those segregated systems solutions, and; 2) that the community is incapable of welcoming and including the individual beyond those segregated systems solutions.

This connects to a wonderful full day that most of the team spent with Al Condeluci on May 8 talking about social capital, quality of life, and community inclusion. One of Al’s key messages is to understand that systems are necessary and important, but where things go wrong for certain members of society (and in particular people with intellectual disabilities) is that they become destinations, when the focus should be returning people to the “life world” as soon as possible and to the greatest extent possible. When we becoming ill, we may need to spend time in a hospital, but the whole point is to get better and to be returned to our lives.

People with intellectual disabilities and their families don’t always have needs that are easily or quickly met by the community, and so they may need some ongoing systems resources to experience success. This need may arise suddenly in times of crisis. Once the crisis has been addressed, the individual/family should be able to resume their lives, and be supported to have success in doing so. But for the most party, that’s not how it works. What we have instead is that the systems life (group home, day program, etc) has become for many a permanent destination. Frequently, individuals enter into those systems environments with the idea that it will be transitional – but the evidence is clear (and it makes sense) that it is hard to help people become included through environments that exclude them.

“The Power of Positive Being” by Dan Tomasulo talked a lot about “happiness hygiene”  – simple tips and tricks we can all use to increase feelings of positive well-being. Well-being is a construct; and well-being, not happiness, is the topic of positive psychology. Well-being has five measurable elements (PERMA) that count toward it: Positive emotion, Engagement, Relationships, Meaning and purpose, and Accomplishment.

Dan talked about engagement, meaning, relationships, and positive/pleasure experiences that are important to both emotional and physical health. He also shared concrete tools that people with intellectual disabilities have been using successfully, some of which will be helpful to our own members. Like anyone else, people with intellectual disabilities can develop negative thinking patterns and need help understanding what they can do to help change the way they are feeling.

“What Every Parent Needs to Know to Help Their Adolescent with Asperger’s, High Functioning Autism or a Learning Difference Become an Independent Adult” by Michael McManmon – a long title, but a terrific message. One of the popular ideas he shared (which can work for anyone who has difficulties with being rigid or dealing with change) is to organize a group of 5 people who you trust and respect and you can call upon whenever you are stuck. Before that becomes necessary he recommends the SODA process: 1) Stop what you are doing 2) Observe what is going on 3) Deliberate 4) Action.

Michael also recommended to parents to establish a “culture of change” starting while children are young – explain that “things are going to change” is a rule of the household, and take deliberate steps to reorganize the furniture, have a varied menu for meals, and take different driving and walking routes to get around. “I know it will be hard, but make [household culture of change] a rule, and it will dramatically change your child’s future.”

Many members of the staff team have spent time with Al Condeluci many times but for some it was a first opportunity to get engaged with his passion for social capital. LiveWorkPlay is well in alignment with Al’s view that the work of agencies in our field should be to help with the transition of people with intellectual disabilities from being “in” the community to being “of” the community. While this very much describes the daily work of LiveWorkPlay, we have some work to do in explaining it better.

For example, with some important but relatively straightforward planning, anyone can sign up for a club, course, or team in the community. Where the real work begins is locating the gatekeepers in those community groups and helping build relationships so that a person with an intellectual disability is welcomed and can progress within the group – build their social capital – so they move beyond “having presence” to being a respected contributor. We follow the same process with respected to living and working – finding an apartment or job can be difficult, but the hard work begins with helping people to be successful in their neighbourhood or workplace communities.

There were many quality workshops dealing with topics of sexuality and people with autism and/or other intellectual disabilities.” Understanding Relationships, Intimacy & Sexuality in Individuals with ASD and Asperger’s Syndrome” by Isabelle Hénault reinforced the need for continuing attention to relationship issues. Isabelle’s research demonstrates a very strong desire for “Wanting to be a friend and lover” but individuals involved in her study were also self-aware that they have little intuitive knowledge and/or experience of how to do either. The fact is, friendships and couple relationships are hard work and yet people with intellectual disabilities rarely have help in these areas in ways that meet their individual needs.

Attempts at friendships and couple relationships by people with disabilities can result in very painful experiences, and sometimes those around them want to protect them from that pain (despite knowing that they also went and will continue to experience pain in their own relationships). Instead of attempting to “protect them from relationships” supporters need to help people with disabilities navigate barriers to successful relationships. These barriers can be quite practical, such as not understanding how to make invites and organize social gatherings. This results in feeling rejected when the real explanation may well be that the invitation creates impossible expectations for the recipient. On a more complex level, many people with intellectual disabilities need help understanding the difference between the paid staff relationships that are common in their lives versus a friendship, where reciprocity is required and expected.

Various members of the LiveWorkPlay staff team received encouraging feedback throughout the conference. We were particularly touched by the time taken by senior YAI Network executives to comment directly or indirectly on our presentation and/or the contributions we made as session attendees. Because we see him as a mentor figure, feedback from Al Condeluci fired us up most of all. It’s not that we feel we’ve “arrived” but rather that we are feeling comfortable and confident that what we are trying to achieve – and what we are encouraging our community to achieve – is of benefit to our members and to other people with intellectual disabilities and their families, but most of all, to the human family. The positive feedback won’t slow us down, it has only energized us to do more, and make more invitations for others to join us!