By my friend Michael Ellenbogen on July 27, 2015:
My speech at NAPA.
My name is Michael Ellenbogen and this speech is being read on my behalf because of what I believe to be a failure of the NAPA committee to set the best example for others when working with those living with dementia.
About 6 years ago I was an Early Stage Advisory Group member for my local Alzheimer’s Association. We were encouraged to identify issues for people with dementia so we could make a difference. I identified that Minorities were being discriminated against at a local hospital in my area. The Association didn’t want to explore my concern as this hospital contributed money to them.
That day will stay in my mind forever as that is what got me so angry that I started my advocacy. I soon realized that many of the agencies that tried to make themselves look good in others’ eyes actually failed the very people they were claiming to support.
I took on many roles over the years and became vocal, as I realized that was the only thing that seemed to work. I did not like doing that but I did not have time on my side. I needed action quickly. I have tried to enlist many others with dementia over the years but they were afraid that they would be treated unfairly for being honest.
A few weeks ago our government made a deal with Iran after they said they wanted to kill us. We even offered to give them 150 billion dollars after that. The president recently said we need to release convicts and give them a second chance. But they feel I am a threat.
I live with Alzheimer’s and I am saddened to realize our government is contributing to keeping people with dementia from getting the rights they deserve. Yes, I wanted my words to get your attention. I apologized very quickly when I realized I may have offended someone even though I had no harm intended in my words. Not one person from HHS ever asked me what I meant by my statement. Not one. I, a person living with dementia, am instead being treated like a crazy person, rather than being treated with respect. I knew of the stigma associated with this disease. I and many of my friends, also living with dementia, never had this type of stigma in our minds.
I have since reached out to many who have always spoken to me in the past. All my emails and calls have been ignored. Most of you have known me for over 3 years now, I am no stranger. And for your information, before I submit my speeches they are vetted by others who do not have dementia. I have always tried to do what was right.
I have been able to bring others to these meetings with me from time to time. I so wish there were many others with dementia at this meeting. If there were, I would not feel the need to be here.
Your actions have resulted in scaring them off even more. Others living with this disease have told me this was the treatment they were afraid of. You, the committee, should be ashamed for not doing what is right for all of those with dementia. In my opinion you get an F for failure. You have lost the respect of many by the action you took so heartlessly.
Many have spoken to me about this, even some on other committees, who believe the wrong decision was made. What I cannot understand is why no one can be professional and undo this error. Your actions here have shown me even more how NAPA has failed the people living with dementia in the US and should not be used as any model.
I have even been removed from the list serve emails so I no longer receive update emails from NAPA. Let’s speak the real truth here. It was not my words that caused fear here; someone just did not like a person with dementia speaking so honestly.
And, secondary to my banning, the Alzheimer’s Association decided to strip me of my position with them and I am banned from their public meetings. The two leading organizations, HHS and the Alzheimer’s Association, who are supposed to support people with dementia, just threw a person right under the bus.
This is a poor example set by the same people helping to create dementia-friendly communities.
As a person with dementia I am proud.
As a person with Alzheimer’s I have many difficulties.
As a person living with a disease I still have my pride and dignity.
Don’t take that away from me by saying things I did not say and treating me like a crazy person.
You should have received the World Purple Angel pin today which was given to you by Abington hospital. It is my hope you will wear it proudly in support of all types of dementia.
Above is with permission from Michael’s FaceBook page at https://www.facebook.com/MichaelEllenbogenMovement
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