A DISABLED MANIFESTO - WE STAND TALL

A DISABLED MANIFESTO
We proclaim that we are born free and equal human beings; that our
disabilities are limitations only, and that our identity does not derive
from being disabled. We proclaim that we have the same value as people who
are not disabled, and we reject any scheme of labeling or classifying us
that encourages people to think of us as having diminished value. We reject
the idea that institutions must be created to "care" for us, and proclaim
that these institutions have been used to "manage" us in ways that
non-disabled people are not expected to accept. We particularly denounce
institutions whose purpose is to punish us for being disabled, or to confine
us for the convenience of others.

We reject the notion that we need "experts," to tell us how to live,
especially experts from the able-bodied world. We are not diagnoses in need
of a cure or cases to be closed. We are human, with human dreams and
ambitions. We deny that images of disability are appropriate metaphors for
incompetence, stupidity, ugliness or weakness. We are aware that as people
with disabilities, we have been considered objects of charity and we have
been considered commodities. We are neither. We reject charitable
enterprises that exploit our lifestyle to titillate others, and which
propose to establish the rules by which we must live without our
participation.

We also reject businesses that use us as "warm bodies" to provide a passive
market for their services, again laying down rules by which we must live for
their profit. We recognize that the lines between charities and businesses
are blurred in the disability industry, and we do not accept services from
either if their essential function is to exploit us. We assert our rights of
self-determination in the face of rules, eligibility criteria, regulations,
customs, laws or other barriers, and we pledge not to allow any authority or
institution to deprive us of our freedom of choice.

Finally, we assert that any service we need, from specialized teaching to
personal care, can be provided to us in the community among our non-disabled
peers. Segregated institutions are not necessary to serve us, and they have
been the greatest source of our oppression, especially when they have been
run by able-bodied people without our participation. All human beings are
more alike than we are different.

We recognize that when we assert this belief we will find ourselves in
conflict with regressive institutions and their supporters, some of whom may
be disabled themselves. We do not expect thousands of years of stereotyping
to dissipate quickly. We commit ourselves and those who come after us to
challenge our oppression on every level until we are allowed to be fully
human and assert our individuality ahead of our disability.

By John R. Woodward, M.S.W. Center for Independent Living of North Florida,
Inc.

Today Is Mine -Welcome To My World

Yes today is mine, tomorrow may not be. This road that i now travel has exit rammps, but who knowws where they lead so I stay on it. One may be the one I take that ends in a few steps and I am gone, not in a physical sense, but me who I am will be gone. That is the nature of this fricken disease, you never know when that moment is going to arrive. I belong to a 12 step program for 34 years that hass done its best to teach me to live one day at a time, that now has an entire different meaning to me today, for now it is hour to hour. Went shopping with the Mrs. last night, got some soda, candy (i am a push over for that), paper towels and a bunch of toliet paper. You see we keep the sanitaaation departmentt working. Probably took all of 45 minutes, I was totally exhausted from it. So there you have it, a day with Alzheimers you never know when you are going to disappear into the realm of whatever, not knowing anyone or anything, pretty damn scarry isn't it. In the words of Elvis Presley (The King), WELCOME TO MY WORLD, WON'T YOU COME ON IN.

Where Am I?????

This is a question that I was always asking myself and slooowly seem not to anymore. I does not seem to matter. I fall and stumble more and it bothers others, but it is like I almost don't notice it or it is gone from my mind in seconds. I sit and stare at this beast of humanity and family think I am dooing somthing, but reallly I do not have the faintist idea what is going on. It is becoming more difficult for me tho pull my mental tissue together to focus on what I am doing or talking about. Blankness is becoming more normal to me. Dr. has increased meds to help, I take more vitamins. Physically Ifeel fine, but the head and body seem to not like each other anymore, go in different directions. Look at new reasearch and they say it is promising, but dig furher and find reasearch that says the opposite. It seems no one is talking with those of us with AD on a daily basis to really see what happens. There are 100s like me that have blogs and websites, that try to tell the world what we are like and the tortures that take place in our brains. But unless you are drulling at the mouth, pissing in your closthes, not eating at all, wearing the saame clothers for months and need nearly 24 hour care, you cannot possibly have this disease and should not beaware of what is happening to you. News People, we know. Ask Nancy Regan about our President Ronald and listen to her and what she and him together went throug. Some of us hang on, because of physical condition others go quickly, we don't know where our own step over the edge point is. Try living that way and see how you feeeel.

God Bless You and This Country of Ours!
Joe

To My Daughter - My Terror

Dear Daughter,
I can only imagine your fear and how scarred you must be. You see, the brother you lost 5 years ago was my son and I lost him to. I have had to learn to accept and love the new person he is because of the acccident. But I can still remember having to teach him to wipe his ass all over again at 17, how to walk, to talk, to spelll (me of all people), you were not there the first day they sat him up in bed and he just ddroped over and drulled and I had to leave the room because I could not stand it and had to go back in and help, that is what parents do. I lost your sister twice when she got married both times also, I was sad but was filled with hope and joy for her future, which seems to be coming together. Your other sister, yes you guys never really had her, but neither did mom and I, she put us through hell, such as I wanted to beat her sense, but that would not have helped becauuuse she already was senseless. I remember carring her in my arms bleeding to death because of her canceer and now she has given us two really beutiful grandchildren, your niece and nephew. You I will be loosing soon to someone you love dearly and I will be hurt but happy for the adventure that awaits you and the wonder that can be yours. I climb a mountain from time to time to survey as far back as I can see to the present to look for the rays of hope for each of you and I have seen them. Maybe you need to due the same with your older sister and get awaaay from the trees so you can see the ever so small changes and the attempts she is making and open your heart. I have learned not to morn over losses of those we love, but to cherrish the time that we have had with them. Scarry step into my brain where the storm continually rages and I cannot find my way. Shit I can not even hold your mother anymore and love her as I did once, becuase I forget how to. Don't cry for me or pitty me, this is the way it is period. Don't have to like it, but loved one we cannot change it. The doctors are changing my meds the time I take them and the doses to try and slow things down. Will it help, who knows? But I do what I have to. I have always loved you guys and will even when I no longer can remember who you are. I have tried and probably failed miserabllly at times to be the best I could for you guys and do the best and right thing. But I am only a person with faults and now a failing brain. It may scar you, but try to listen to the Alzheimers Prayer on my site. Plays best unfortunately in IE and maybe it may help. But remember you I love and am proud of as I am all of my family.

With Gods Love,
Your Dad

In The Mornings Quietness

I am sitting heree this morning trying to think of how I feel and really am not sure. I am slowly starting to feel that neither me, my friends, loved onees ore even those who do not care one way or the other give much of a damn anymore. The confusion creaps in a little deeper each day, the harder I try the worssse it seems to get.. Interest in things is leaving me, I am looking through different eyes then what I used to have and they don't see much light anymore, and I accept that as ok. I guess it is what it is whatever that means. Why I do this makes no sense in my ½ brain cell, then much of how I feel or thinkkk anymore does not seen to make any sense. I keep trying to help and control myself but I know ai I am doing is slowly loosing it and probably making people not so comfortable in my presence. All I know is that my so called friends and good part of my family no longer communicate with me. Maybe they are afraid, well fuck welcome to the crowd. So much for my ramblings, but this is my only outlet, words do not come out of my protective shell to others very easily at all. Beaten to many times as a kid and left unloved to give up of me very much. Now when I want to my wonderful brain (the pink matter) doesn't graps the concept very welll. anymore.
God Bess
Joe

As The Storm Clouds Gather

Today is one of those daaays that my head is filled with thunder and grey clouds. I am having a hard time conccentrating and paying atttention to what it is that I am doing. My head is filled with pain that asprin and such will not relieve. It is the total frustration of what is happending and I have no fricken control over it. It makes sit and cry whrn I am alone and even others are around. My only ansswer is that everything is ok, when it is not. It is becoming more difficult to express my self and feelings. All I know is that my house is in order and I await. So each day I slowly slip off to some unknown adventure and listen to all those whoo think that they know what is best and have no idea. There will come a time that this is nolonger holding me.

God Bles
Joe

My Friend Tracy Wrote This

What follows is a post written by a friend on a different board, I think that I have never heard this disease more eliquently stated than this and how to handle us. The wisdom that follows is not mine, I entirely give Tracey full credit and hope she does not mind my usage of it.

This has been my mission of education and very well may be my last post. Read, learn and listen to her, she suffers from this rotten mind robbing disease herself.



On 5/1/07, YoungHope wrote:
>
> There are ALL kinds of books that have been written clinically and
> scientifically from professionals of all walks of life about
> Alzheimer's Disease. These books profoundly state what the symptoms
> are? How old you HAVE to be to be diagnosed. Books that describe the
> different stages. Books that tell about the different medications
> that are available to treat the symptoms of the disease. These books
> also tell us how we should treat our loved ones with
> Alzheimer's/dementia, how we should take care of them, what we
> should do, what we shouldn't do. The books also tell us how we
> should feed them, what we should feed them, how we should dress them
> and keep them potty trained, what type of a routine they need to be
> on, how to keep them awake during the daytime, how to make them
> sleep at night. These books even tell us how to keep your loved one
> happy and active, when to get your POA and Guardianship papers drawn
> up. These books give all of these answers and more but these books
> do not tell HOW OUR LOVED ONES WANT TO BE TREATED only what they
> think should be. What they are forgetting is that one day they could
> be this person with Alzheimer's Disease and then would they want all
> of these demands put upon them? Probably not.
>
> The answers that are not in the book are the important things such
> as, if we are in the final stages and do not want to eat, do not
> force feed us. Don't grind our meat up to look like something that
> the cat just spit up. Would you want it? probably not.
>
> Don't force us take our clothes off and take a shower, but be
> patient and treat us with dignity and respect. Help us to bathe from
> our chair, help us brush our teeth or our gums and to put on clean
> clothes, but please don't scold us for a fear of the unknown.
>
> Don't force us to get up in the morning, help us turn from one side
> to another to keep our skin healthy. Open the curtains to let the
> sunshine in, read us a story or just sit and talk with us. Remember,
> we are still human.
>
> Don't force us to go places that we no longer remember. Show us a
> picture and tell us about this long forgotten place and maybe, just
> maybe, we will decide on our own to go with you, but if we don't,
> don't be angry, remember that you were that way many years ago.
>
> Don't force us to go to bed, tell us that it is time. Help us change
> into our night clothes, dim the lights, turn some music on from our
> day years ago, soft and low and sit near us, let us know once again
> that we are not alone.
>
> Encourage us to take our medicine. There will come a time that no
> matter what we take, the medicine will no longer work and the
> disease will have won its battle with us. Don't yell at us or curse
> at us, remember we have fought long and hard, now we just need to
> rest at our own pace not at the pace of medical technology.
>
> These are some of the answers that you won't find in a book but only
> from the eyes and heart of a person with dementia.
>
> Tracy
Reposted here by Joe.