I've heard so many adult cystics saying (basically) "nothing about us without us" . This phrase come out of the disability rights movement. (It's also the title of a famous excellent book by James I. Charlton ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/Nothing-About-Without-Disability-Empowerment/dp/0520224817/ref=sr_1_1?ie=UTF8&s=books&qid=1216509459&sr=8-1">http://www.amazon.com/Nothing-...&qid=1216509459&sr=8-1</a> ) ).
The phrase means if you are going to offer support for my disability then make sure we (the people with the disability) are the people who decide what is "best" for us - not others.
As much information as this site offers, it is by design a dotcom site a forprofit site -- and just one of many under the M.L. Burke Consulting, Inc. (see <a target=_blank class=ftalternatingbarlinklarge href="http://www.mlburke.com/about.html">http://www.mlburke.com/about.html</a> ) Medrise umbrella <a target=_blank class=ftalternatingbarlinklarge href="http://www.mlburke.com/niche_markets.html">http://www.mlburke.com/niche_markets.html</a> . Although Imogene has been generous in sharing her vision with us, I suppose she has understandably limited her disussion to the CF site vision. At any rate, I found her blog on the MLBurke site ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.mlburke.com/blogs/jeanne/">http://www.mlburke.com/blogs/jeanne/</a> ) much more helpful for me to have an undertanding of her overall goals. As you can see from reading, this type of dotcom offers both strengths and limitations.
For adult cystics who really want to have significant input into the workings of site for adult cystics, it belatedly occurs to me that like others with disabilities who feel "nothing about us without us", they might want to work with a nonprofit organization that is run and operated by people with cf -- an association in which they themselves are the major stockholders (if you can say a nonprofit has stockholders)
There is, for example, the United States Adult Cystic Fibrosis Association, Inc. (USACFA) which is operated entirely by adult volunteers who have cystic fibrosis (CF), unaffiliated with other CF organizations, and formed to provide a source of information and education for adults who have CF" see <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfroundtable.com/index.html">http://www.cfroundtable.com/index.html</a> .
But I am not an adult cystic and so have never participated in this association (tho' I have come up to their site frequently). Perhaps others can comment (civilly of course <img src=""> ) about their experience with this association or others that they know about.
The phrase means if you are going to offer support for my disability then make sure we (the people with the disability) are the people who decide what is "best" for us - not others.
As much information as this site offers, it is by design a dotcom site a forprofit site -- and just one of many under the M.L. Burke Consulting, Inc. (see <a target=_blank class=ftalternatingbarlinklarge href="http://www.mlburke.com/about.html">http://www.mlburke.com/about.html</a> ) Medrise umbrella <a target=_blank class=ftalternatingbarlinklarge href="http://www.mlburke.com/niche_markets.html">http://www.mlburke.com/niche_markets.html</a> . Although Imogene has been generous in sharing her vision with us, I suppose she has understandably limited her disussion to the CF site vision. At any rate, I found her blog on the MLBurke site ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.mlburke.com/blogs/jeanne/">http://www.mlburke.com/blogs/jeanne/</a> ) much more helpful for me to have an undertanding of her overall goals. As you can see from reading, this type of dotcom offers both strengths and limitations.
For adult cystics who really want to have significant input into the workings of site for adult cystics, it belatedly occurs to me that like others with disabilities who feel "nothing about us without us", they might want to work with a nonprofit organization that is run and operated by people with cf -- an association in which they themselves are the major stockholders (if you can say a nonprofit has stockholders)
There is, for example, the United States Adult Cystic Fibrosis Association, Inc. (USACFA) which is operated entirely by adult volunteers who have cystic fibrosis (CF), unaffiliated with other CF organizations, and formed to provide a source of information and education for adults who have CF" see <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfroundtable.com/index.html">http://www.cfroundtable.com/index.html</a> .
But I am not an adult cystic and so have never participated in this association (tho' I have come up to their site frequently). Perhaps others can comment (civilly of course <img src=""> ) about their experience with this association or others that they know about.