Guardians are not the “bad guys”

As a parent and guardian of my young adult son with complex developmental disabilities which include an intellectual disability, I am continually made aware of the “fact” from trained self-advocates that my opinion has nothing to do with what may be best for my son and that, as a guardian, I am only self-serving.  Also, since I do not have a developmental disability myself, I have no knowledge of what it is like to live with a developmental disability – more specifically an intellectual disability.

I fully support trained self-advocates in their mission to advocate for a meaningful life experience and to shape public policies to which affect the lives of people with developmental disabilities.  I do not believe that the trained self-advocates have a full understanding of the needs and supports that people with complex, profound or intellectual disabilities (IDD) would choose.  I also do not believe that these trained self-advocates understand the issues of needing a caregiver 24 hours a day to assist with ALL aspects of daily living and how the guardian is involved in helping a person to have a meaningful life experience.

The legal guardian has a court-ordered responsibility to speak on behalf of and in the best interest of the person for whom they represent.  The guardian, together with other caretakers, and the person needing the supports work as a team and the guardian can be the spokesperson for the person with IDD.

I understand there are many people with IDD who are able to speak up and advocate for themselves and ask for what they need and that’s great. Unfortunately, just by definition of this particular disability,  only the people with the characteristics of “mild” ID may be able to live independently with minimal support and/or intermittent support during times of uncertainty.

Unless trained self-advocates are providing the day in and day out, 24 hour care needed by the people who experience  the “moderate,” “severe,” or “profound” characteristics of IDD, they have no concept of the needs, supports and choices that these people would make and have no right to speak on their behalf.  Since by definition, this population is unable to advocate for their needs and supports, the guardians, caretakers, family members, community members, healthcare providers, and friends who know the person best are the the most appropriate advocates for this population.

Denying guardians participation in advocacy on behalf of the people they care for is an act of discrimination against this population.  The slogan “Nothing about us, Without us” includes the guardians when they are speaking in the best interest of the person who they have the legal responsibility to make decisions for.

The table below clearly differentiates the severity categories in the classification of those diagnosed with intellectual disability.

clinical characteristics of Intellectual Disabilities

This discrimination is practiced by many organizations and advocates who claim they are advocating for those with disabilities.  In the response I received from Alex Clardy, Legislative Assistant for Seattle City Councilmember District 1 Lisa Herbold, it is clear they do not understand how this population communicates and the discrimination practices greatly limit the ability of the policy makers to fully understand how these issues will affect the people who work these jobs.

“The PwD Commission received no comment opposing the elimination of the subminimum wage certificates. Some people contacted Councilmember Herbold’s office concerned that people need the subminimum wage to get jobs.  Yet, no people with disabilities contacted Councilmember Herbold’s office to say so.  Since the PwD Commission, through their individual lived experiences, can speak to these issues best, Councilmember Herbold asked that I share with you excerpts from the PwD Commission letter that outlines several specific points as evidence against these concerns specifically and opposing the subminimum wage as a policy. “

( I will comment on the so-called “evidence” which the Seattle Commission for People with Disabilities (PwD Commission) provided to the City Council in another blog post)

It needs to be noted that there are no representatives with IDD on the PwD Commission and they totally disregard the guardians and the collective experience of the guardians, caretakers, friends and community members of people with IDD.  The PwD Commission is exclusionary when it comes to people with IDD.

Another group – Self Advocates in Leadership has the following items in their 2018 legislative agenda:

Sail 2018 legislative agenda

Are they suggesting that supported decision making replace guardians?  Is this logical for the people who live with severe forms of IDD?

 

 

“Fiery exchange” or “healthy discussion?”

I am sharing this blog and adding my comments here because NOS Magazine tends to censor comments that may disagree with some of their opinions.  I actually think this was a healthy discussion rather than a “fiery exchange” or terms that I have read about the conversation.

The comment that I attempted to post on NOS Magazine is below:

“I would like to respond to this article and to the IACC also with regards to the issues raised regarding the spectrum and does the diagnosis of “Autism Spectrum Disorder” really mean anything at all anymore.
After the engaging conversation between some self-advocates who identify as “autistics”, a mother of a severely affected child with autism and also guardian of her brother with autism, Director Dr. Joshua Gordon and Dr. Geraldine Dawson, it became very clear that these members realize there are some major problems with trying to reign in on the needs of this extremely heterogeneous population.
Dr. Gordon repeatedly stated comments about having a situation where we don’t know a better way to describe autism except as a spectrum and that we do not have diagnostic differences to create different labels within the spectrum.
Sam Crane then mentioned that the DSM V now uses the term “spectrum” because it also can be described as ASD with a specific characteristic. Dr. Geraldine Dawson then clarified that comment further by explaining that in the DSM V the diagnosis of ASD was meant to be used with specifiers.
• With or without accompanying intellectual impairment
• With or without accompanying language impairment
• Associated with a known medical or genetic condition or environmental factor
• Associated with another neurodevelopmental, mental, or behavioral disorder
• With catatonia
Even without the above specifiers there is also criteria within ASD that indicate 3 different severity levels based on social communication and restricted behaviors.
I would also like to add that in addition to the above information there are also many genetic syndromes which have autism included in some of the characteristics of that syndrome. The primary diagnosis for these people would be the syndrome and autism would be a secondary diagnosis.

For instance, I work with two young men about the same age who both have Fragile X syndrome. One of these men has autism and the other one doesn’t. There is a huge difference in their level of functioning based on the autism diagnosis. This person needs extensive supports (24-hour residential care) while the person without autism continues to live with his parents, has a job and is out and about in the community independently shopping and getting around on the bus.
Some of these syndromes also cause an intellectual disability and/or schizophrenia or other mental health disability. From what I have seen it is the people with a combination of various diagnoses in the DSM 5 that tend to need the most intensive support and may also be the ones who are not able to advocate for their own needs. This is why it is critical to have parent/guardians/caregivers or other advocates come to the table to speak on their behalf.

Update:  As I expected my comment was not allowed to be published on the NOS blogsite.  They practice censorship and exclusionary actions and do not tolerate “Neurodiversity” if it does not agree with their opinion.

https://iacc.hhs.gov/about-iacc/subcommittees/resources/dsm5-diagnostic-criteria.shtml#autism-spectrum-disorder

On Tuesday, a fiery exchange took place between autistic advocates and autism parents the quarterly Interagency Autism Coordinating Committee meeting about inclusion, civil rights, and the usefulness (or lack thereof) of functioning labels. IACC is a government advisory panel responsible for setting federal research priorities. Only three of the 31 IACC members are autistic themselves.…

via Autistic Advocates Clash with Autism Parents at Government Committee Meeting — NOS Magazine

Seattle Commission issues apology

Update (October 12, 2017) 

I have been asked by some commissioners to file a formal complaint with the City of Seattle regarding the abusive nature of interactions between a particular member of the Seattle Commission for People with Disabilities and community members and organizations who had a concern. 

If you or others you know felt that a member of the Seattle Commission for People with Disabilities was abusive or inappropriately criticized you in their response to you, I have been asked to send a formal complaint to both the Commission and the Office of Civil Rights – Seattle Department of Civil Rights – complaints Thank you.

 

This past week a representative from the Seattle Commission for People with Disabilities sent an apology to me for being banned from their Facebook page by one of the page administrators.

According to the representative, the page administrator took things way too far.  Because of this incident, they have instituted a temporary social media policy and reassigned roles.  The Commission will be formally adopting a policy in October.  Until that time, you and another have been “unbanned.”

The commission will, however, be moderating the page tightly and will remove posts that become “inflamed” or that attack another.  You and Friends of Fircrest, were attached because of one person’s vociferous opinion about Fircrest and his mixing his personal opinion with that of the Commission (which has not yet taken a position.)

 

I appreciate the acknowledgment of the censorship and accept the apology.  I do hope to be able to attend upcoming meetings to provide another voice to the conversation.

We need to have these conversations to build a stronger community.

Just my opinion

Caution – this is just my opinion – you may or may not agree, may be offended or not – but I own it.  You are allowed to comment, I won’t censor if you do not agree with me or if you hurt my feelings – I may tell you but I won’t censor your opinion.

When a person writes an “OPINION” essay and it is published  in a public online magazine it becomes open for discussion.  Some people who write “opinion” pieces become upset or hurt at comments that may be generated from readers who express their own opinion or have questions for the author of the original “OPINION” piece.

Isn’t  one objective of an “OPINION” essay to gather comments and hear what others may have to say?  It may be an opportunity to learn from others who may have a different opinion or to learn a different perspective from those who share the same opinion.

This issue is one that I have faced over and over again with regards to advocating for people with intellectual and developmental disabilities. Apparently there is a “right” opinion and if your opinion is different than that “right” opinion your comments may be deleted and you may be banned from further discussion.

This censorship only causes harm to those who the so-called advocates are supposedly advocating for.  Without an open discussion regarding various viewpoints people will be isolated and unable to work through problems that may exist.  Ignoring barriers to quality care and efforts to help support people in having a meaningful life only only makes the situation worse.  Unless you live in a fantasy world.

 

 

“Take your opinions elsewhere”

NOS Magazine recently published an opinion piece written by Ivanova Smith regarding the issue of “Mental Age Theory”

NOS Magazine

One would think that being a magazine devoted to neurodiversity and open to “publishing opinions from many corners of the neurodiversity community” that censorship and blocking participation from advocates in discussions is counter to the mission.  Apparently, only those neurodiverse in the “right” way are allowed to comment and exchange opinions or answer questions from others.

Saskia Davis, published  her thoughts about the article above on NOS Magazine.  There was a follow-up comment to which Saskia wanted to reply and it was then that she realized that her post had disappeared and her reply was not able to be posted either.

I offered to publish Saskia’s responses on this site because I think they are worthy of being read and understood.  The first comment can be read on Developmental Disabilities Exchange.    The follow up comment is below in this post.

NOS banner

NOS Magazine is a news and commentary source for thought and analysis about neurodiversity culture and representation. Expect long form journalism, reviews of pop culture, and more. NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.

Opinions: Not Otherwise Specified

Stories: Not Otherwise Specified

Perspectives: Not Otherwise Specified”

NOS Magazine is a publication for the neurodiversity community. As such, people who identify as a part of the neurodiversity community and/or who are neurodivergent in some fashion will be given publication preference in order to ensure that this publication is a voice of the community. We recognize and respect self-diagnosis as valid and do not have a standard of who is “disabled enough” to count.

Opinion

Published pieces are not necessarily the opinion of NOS Magazine. We are open to publishing opinions from many corners of the neurodiversity community.

 

Responding to: (from Saskia Davis)
Ivanova Smith
September 11, 2017 at 7:25 pm
“I going to share some examples people can to explain their love one support needs that don’t use mental age theory. I some people being asking me for alternatives……..” (http://nosmag.org/mental-age-theory-hurts-people-with-intellectual-disabilities/

I wrote:
“These are helpful suggestions.  How would you help a person understand the level of constant,  total care that is required for the support of someone who lacks the capacity to make safe decisions, lacks verbal ability to express what is wrong, and what s/he wants,  but has enough, almost understandable vocabulary to  frequently repeat the same few phrases,  can’t safely mobilize herself anywhere,  is absolutely distractable, and doesn’t  care to focus on anything except neckties or hats or cars, will choke due to putting food in her or his mouth before swallowing the last bite  if allowed to self feed, except that is impossible because s/he can’t load her own spoon, but can hold a glass and will choke if not dissuaded from laughing during drinking, while self-feeding, gets food all over her/his face,  body and clothes, laughs with delight when something or someone  falls on the floor  and finds it great fun to empty surfaces of their contents to see them fall,  or someone who can carry on a delightful, if limited conversation  but, who, if asked questions  or when another person  wants his food  or when he can’t have food from someone else’s plate, will throw a 20 minute  tantrum just like those that two year olds throw,   (only this person is 6 feet tall and weighs 160 pounds)  hollering, throwing himself on the floor, writhing, kicking screaming, hitting, biting, and who   has been unable to learn to tie his shoes or put them on the correct feet and who remains incontinent at the age of 21 despite many patient years of family members and caregivers’ attempts to help him achieve continence. In few enough words so that the reader or listener will stay engaged to understand the other points you are trying to make, how do you give a picture of such a person that allows another  to understand the intensive level of care  and careful planning for support that is needed and the struggles the person endures in order to make progress?  Thanks in advance for your suggestions.”

 

The title of this post is a quote from Sara Luterman, editor of NOS Magazine in answer to my question regarding removal of my own posts.

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective