March 29, 2013

Circles of support

We have done a lot with Alex about planning for her future using person centered planning (PCP), this is how we originally discovered Alex wants to go to college. The following excerpt from Wikipedia explains the design of PCP:

A central idea behind person-centred planning, is that services which are set up to respond to problems of social exclusion, disempowerment, and devaluation, can unintentionally make the situation of individual people worse (i.e. further disempower, devalue and exclude people). Person-centred planning is designed specifically to 'empower' people, to directly support their social inclusion, and to directly challenge their devaluation. One of the benefits of person-centered planning is that it can address the perennial "service problems" of ethnicity, gender, culture and age by starting with planning by or with the "whole person".

Person-centred planning isn't one clearly defined process, but a range of processes sharing a general philosophical background, and aiming at similar outcomes. As it has become more well known further processes and procedures have also been given the title 'person-centred planning'. Some of these have little in common with person-centred planning as originally envisaged.

As part of this planning we have created circles of support for Alex and for us. From Wikipedia:

Person-centred planning involves the individual receiving the service, with family members, neighbors, employers, community members, and friends, and professionals (such as physician/ doctors, psychiatrists, nurses, support workers, care managers, therapists, and social workers) developing a plan on community participation and quality of life with the individual. In contrast, traditional models of planning have focussed on the person's deficits and negative behaviours, labelling the person and creating a disempowering mindset from the start.

This past week I have learned a lot more about the importance and power of circles. I learned circles do not only exist in our immediate communities, they exist in the cyber community and can be even more powerful. Specially, the circle created as a result of the death of Robert Ethan Saylor a young man with Down syndrome who died as a result of asphyxiation caused by police restraint. This homicide has recently been deemed by a grand jury to have been caused by Down syndrome. Essentially using genetics to explain away a death.

We have been graced by Down syndrome for almost twenty years and in these last twenty years this is the SINGLEST most galvanizing event we have experienced. National Advocacy organizations, Support Groups and Research Foundations have all taken a stand. Hundreds of Down syndrome bloggers have written of this horrific death as have people who have most likely never known a person with Down syndrome. In fact, whenever I go to FB or on-line I see Robert Ethan Saylor’s beautiful face light up my screen. When I think about his death and his family’s loss I cry for them and for us. Are we all just a moment in time from being brutalized too?

But that is not the purpose of this post, there are so many other wonderful posts about this. The purpose of my post is to remind our community about circles. By his death Robert Saylor has been the catalyst for a new and deeper understanding of Down syndrome. His death will bring new training initiatives for police forces and schools, maybe restraint will finally be banned from our school systems. It is because of Robert Saylor that an immense circle of friends, who have never met each other are all working TOGETHER, or at least recognizing that alliances must be made if we want to prevent this from ever happening again.

Take a seat at the circle, stand up for what is wrong, scream for what is right. We all need to support each other and our community of people with Down syndrome. Through genetics we are all connected, honor the power of the circle.


  1. I wish it didn't take something like this to bring about those changes and the collaboration of the organizations to take action. Wonderful post about the circle, though - you got it spot-on.

  2. I like that as a description for what I feel about the bloggers I follow. It feels like a circle of support - I learn of their challanges and learn from them. They respond to my questions and celebrate our victories even though we will never meet.

    1. I know! It is so wonderful we have this technology to support each other!


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