I was a member of the Facebook group “Seattle Disability Community Outreach” until yesterday when I was deleted as a member. I had posted several issues previously and never had a problem and it surprised me that my recent posting “No Room” sparked such militant responses.
This brought up the issue that I have often wrestled with – am I an activist or an advocate – some definitions I find of these two words indicate that the words are synonymous but are they really?
After reading the comments by some members of the Seattle Disability Community Outreach and a description that they are “disability activists” I know that I am not an activist by their definition. I do not understand their type of “activism” because to me it denies people individualized choices – apparently these activist want to make decisions for everyone based on what these activists believe is right. There is no opportunity for discussion or understanding of various needs.
The other issue is the continued referral to the Olmstead decision with regards to institutionalization. I doubt if these people have actually read the U.S. Supreme Court Decision because it does not say to close all institutions – in fact it states that some people will always need that level of care. What Olmstead REALLY says is that people are individuals and they should be allowed their choice – not be forced into what others think they should have – so, in my interpretation of that, these so-called “activists” violate the very decision they think they are quoting.
I realize that this group does not advocate for a continuum of needs nor do they as a group realize that people have different support needs and choices.
I did write the following letter to the 4 moderators of the group – since I am no longer a member I can not comment and try to respond to those who are so adamant against choice and individual rights.
It appears that I have been deleted from “membership” to the Seattle Disability Community Outreach page.
There was a posting that I had regarding “no room” which was militantly opposed to by some members. This is such a shame that activists are so dogmatic in their beliefs that they cannot understand that there are a variety of needs and choices.
Referring to Olmstead is in fact needed – but it’s also important to know what the Olmstead decision really says – It upholds the civil rights and choices – not denying choices. Nowhere in Olmstead does it say to close institutions either.
The fact that a dialogue cannot ensue and the same rhetoric is heard over and over with no accurate data only adds to the violation of rights of our most vulnerable citizens.
Maybe the Seattle Disability Community Outreach group does not advocate for those with intellectual disabilities?
Yes, I know that many, many people were sent to institutions and many, many people did not need to be there – that does not negate the fact that we still do have people with extremely high support needs who need to be cared for. Some of these do choose to live in a campus community. This in no way means that they are not included in everyday life – in fact many have extremely active social lives on and off campus.
Referring to articles of over 20 years ago as “proof” does nothing. There are countless articles about abuse in every setting – but if one did research one would realize that there is much better oversight in supportive communities than in scattered and isolated homes.
I’m saddened by the lack of awareness of these members who wrote – maybe they are not aware of the many families in our area who are in crisis trying to care for their young adult children with severe intellectual disabilities – many who also have some form of mental illness. Sure, it would be nice to have their own home and have stable caregivers but our society does not respect these much needed caregivers and the staffing turnover is over 40% in many of these homes.
For people who cannot dress themselves, cannot cross a street, cannot be safe without every door and window locked for various reasons and need to have 1:1 or 2:1 staffing to maintain safety without restrictions, sometimes the campus setting is the least restrictive and when people are militant about “community” they do not understand the issues of some or our most vulnerable citizens.
As an advocate it upsets me to see others advocate against safe and appropriate care only because the setting was not right for them. It’s time to really uphold the Olmstead decision and allow choice and individual rights and access to safe care.
I am sending this to all four of the moderators of this group. Share if you like with the membership. I would be more than glad to share original documents regarding cost of care, safety of care and appropriate care.
Cheryl Felak, RN, BSN
Coalition for Community Choice
Developmental Disability Nursing Association
American Association of Intellectual and Developmental Disabilities