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.

Mental Age Theory – Censored

Posting as a follow up to my previous post.  Apparently the editor of NOS Magazine did not approve of the comments that I and another advocate posted.  The comments have been deleted.  I have not received an answer from the editor regarding the reason for deletion.

In trying to describe situations and characteristics we often use similes and metaphors to
help those who are not familiar with jargon understand the situation. When using these
figures of speech, we are in no way belittling the person or saying that person is any less or more than anyone else. These figures of speech are extremely common and are used
throughout all types of writing and speech.
Maybe this is part of the problem with trying to describe a person. When saying that a
“person acts like a toddler ” we are using a simile – it is not saying that person is a toddler at all. It is describing that particular behavior at that particular moment or situation. In the case of my son, his behavior or understanding may not be typical for a 24-year-old in that particular situation.
One could also say that “he is a toddler” which is a metaphor. The simple definition of a
metaphor is that a metaphor states that one thing IS another thing but the statement is not literal – it is just figurative. Many may misinterpret this as the speaker actually saying this is true when in the fact the speaker was using a metaphor.
In the issues of trying to describe the support needs (be it physical, intellectual, behavioral or other) we often need to use similes to help others who are unfamiliar with that person or situation be able to grasp the magnitude of the need. Again, in no way does this figure of speech demean the person being spoken about but can help those understand the level of supports that may be needed to help that person be successful.
One other example of this is referring to a person with progeria as having the body like an old person. The person with progeria is a child but their bodies age prematurely and they have many health issues that are typically seen in the geriatric population. I wonder if people with progeria are offended if they are refered to as having the body of an old person?
Using similes and metaphors as figures of speech is a common and needed practice to help people understand others. We all have reference ideas in our heads about various things.
I’m sorry that people may not understand this issue but that is how the English language
works – it’s not the only confusing thing about this language

I have had contact with the author of the article “Mental Age Theory Hurts People with Intellectual Disabilities” and I hope to meet with her and my son in the near future.  This is my attempt at trying to bridge the gap that is present due to what I refer to as “motive asymmetry”

Below is a link to the deleted comments – these are my comments and responses that were deleted.

NOS deleted my comments on mental age Sept 2017

 

Mental Age?

Motive asymmetry – the belief that one groups motives are driven by love, care and affiliation and the rivals are motivated by the exact opposite.  This term is generally referred to with regards to political conflict but I see fully activated in the issue of advocacy for those with intellectual and developmental disabilities.

It feels to me that motive asymmetry is at play with regards to trained self-advocates and parents/guardians/healthcare professionals/case managers/disability advocates when any topic related to care, support, employment, inclusion, residential settings and community environment are discussed.

As a parent/guardian/disability advocate, this concept is very clear to me since I have been told by many trained self-advocates that guardians are only self-serving. This is truly not my perspective at all but it is attributed to me since I am a guardian. One effective tool used to help bridge this conflict is to meet in person. Once you know the person, views and ideas may change. It is only by meeting people and working together as people, rather adhering to  inflexible ideologies, that we can break down these silos and make progress.

Mental age theory

Ivanova Smith has written an article in NOS Magazine regarding the issue of using “mental age” as a description for people who happen to live with an intellectual and developmental disability.  She states “We need to educate medical professionals that there are better and more respectful way to explain the needs of people with Intellectual/developmental disabilities. Difficulty doing specific tasks isn’t the same thing as being an actual child.”

I have never seen this description used to state that an adult with IDD is a child – they are adults who have a variety of support needs in many areas of life skills.  Using labels and descriptive terms for various ranks, steps or skill levels are used in all types of employment, school, sports and athletics,  and hobbies.  One must pass through step 1 to get to step 2.  This is a natural progression.  One need not necessarily master the step but at least have a passing effort before one is able to proceed or progress.  There could be many reasons for a rapid or slow progression through these levels.
People do not excel in all areas of life and do not need to be an expert in everything they attempt to have enjoyment and meaning from it. Also, people may “stall out” at one step and many years later may revisit and then gain more skills. This is not set in stone as it is a fluid process and there is always learning and progress occurring as people experience life. This progression is also true with developmental, emotional and maturity stages. It is not “good” or “bad” but just is.

I often hear that people do not like labels – but labels help us to learn and navigate life in so many ways. Think for instance of working in trades – there are labels applied to levels of skill development – apprentice, journeyman, master. One is not a better person than another by having a different label but has a different skill set. These labels help us, who may not be familiar with the work to be done, who we might want to seek out for consultation. Labels are not inherently bad but can be extremely useful in many situations.
I am asking for your input into how you, as a trained self-advocate, differentiate between people who may need an extreme amount of support to manage the daily activities of living versus someone who may only need some occasional guidance with specific areas? How do you, as a trained self-advocate, differentiate between someone who is unable to utilize public transportation and needs to be driven everywhere in a private vehicle versus someone who can navigate the city independently on public buses?
Or maybe you do not see the need to differentiate – if not, why not?

Please contact me Ivanova – I would love to meet with you in person.

Thank you – Cheryl Felak

 

Have you ever heard the phrase “that person has the mind of a five year old In an adult body?” It is something many adults with intellectual disabilities, like me, have to deal with. For years, medical professionals have told parents of newly diagnosed Intellectually disabled people that they would mentally be children for their entire lives.…

via Mental Age Theory Hurts People with Intellectual Disabilities — NOS Magazine

#inclusivity  #diversityisstrength  #YouAreTheChange  #beyondinclusion  #disabilityrights  #intellectualdisability   #disabilitysupport  #mentalage  #agetheory

 

Who Watches the Watchman?

When allegations are reported and investigated – what happens if the investigators are actually part of the group the allegations are against?  Who provides an independent review of the allegations if the investigative agency can not be objective and actually do a real investigation?

These are questions I have regarding allegations of medical/nursing neglect and abuse  in the treatment of my son at the state operated intermediate care facility where he lived for 5 years.  The agency which does the investigation is the agency which runs the facility.  Unfortunately, even though the allegations are all medical and nursing care issues, the investigator did not have one healthcare provider review the allegations, documents or look into the fact that policies are outdated or do not meet the minimum standard of care.

But these “experts” have decided that the allegations are unfounded based on interviews with agency staff (non-healthcare) and administration.

We hear that the ICF/ID provides “comprehensive care” including healthcare and that there is oversight to ensure the care is being provided. Maybe in doing random surveys and looking at random samples, it may appear that the care is being provided.  Also in those surveys they do not look at the quality of healthcare or if the healthcare meets the community standard of care.  They seem to check that the providers have current licenses to practice their profession.  I think that we all know that having a license is not the same as providing quality care.

In my attempts to have an objective investigation I have contacted several other agencies in the state, including the Department of Health, and have gotten nowhere.  They all point to the Department of Social and Health Services as the agency providing oversight of the care.  Even though the ICF/ID is a medical facility by federal definition, our state defines it as a long term care facility yet the Long Term Care Ombudsman does not consider it a long term care facility and is of no help.

Clearly there are issues of neglect and abuse – any sane person could look at the records and documents and make that conclusion – for some reason though the Department of Social and Health Services and their investigative team has chosen to continue this neglect by failing to see the obvious and make corrections.

The issues fall into various categories of medical malpractice, medical neglect, restraints without consents, multiple injuries including fractures, false documentation of over 8 medications for over 2 years, failure to communicate with guardian regarding psychotropic medication changes, failure to provide prescribed medical treatments and transport to medical treatment center for prescribed treatments, applying splint to wrong foot, applying splint over shoe rather than inside shoe and failure to protect from client-to-client abuse are just a few of the allegations.  Maybe some of the issues actually fall into criminal categories.

Certainly in my mind the lack of ability of the investigators and the DSHS administration to do an objective and fact finding investigation is criminal.

Does one need to file a lawsuit to get anything done about this?

 

 

What do gardens have to do with oversight?

I love to garden and share that love with others. This is a joy that I share with my son. When he was younger and lived at home he would follow me around the yard and loved to rub his hands on the various herbs and then smell his hands.  He learned what they all were and where they were in the garden.

We currently have a plot in a community pea-patch and one of his favorite activities is sitting in the garden having a snack talking about the various plants we are growing and checking on his flowers.  Tonight we picked some of his huge sunflowers and will save the seeds for bird food in the winter.IMG_1919

Gardening, harvesting, and composting are great activities for people.  Learning skills in these areas can provide not only vocational skills but life skills, recreational skills and exercise to those with intellectual disabilities.

For a few years we had wonderful gardens growing at Fircrest.  Residents were planning meals, harvesting, preparing and sharing.  We were also learning worm composting and one resident even started selling the worms to a local garden store.  This was part of the “Active Treatment” at Fircrest and was set to expand.

With a recent survey that targeted the lack of “active treatment” and the promises of administration stating that the job training program was going to expand brought hope. The new emphasis on active treatment was promising and the news that tomato plants had arrived last April was a step in the right direction.

The hope has been shattered by the reality of the deserted and abandoned garden beds, the empty greenhouses with dead plants and the worm bins that have become garbage cans.  I have even offered several times to continue volunteering to help teach staff how to teach residents or work with residents myself but am ignored and told they are working on expanding.  From the outside it appears that things are getting worse, not better.

This is where oversight comes in.  We are told over and over that there is great oversight at the intermediate care facilities.  But oversight by who and oversight of what?

I believe that oversight should not be left  just to the state agencies but is up to each of us to keep an eye open and ask questions.  For instance, why are these garden beds abandoned and why are the few plants in the greenhouses dead?

I have asked and have offered to volunteer on campus or find a new home for the greenhouses and worm bins so that they can be used by others.  I dream of developing a learning garden in the area for people with intellectual disabilities and these would be prefect.  The answer I got was that they are not for sale and they will not lease the area to others to use.

Please look at the link  Active treatment and gardening at Fircrest.  If you have any suggestions for improvements, please let me know.  This was such a great boost for the residents and it makes me so sad to see it going to waste.

Please share this information and maybe there is some vocational training group or agency that can make something happen so that the time, talents and goods are used to their potential.