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‘Nothing About Us Without Us’ Recognizing the Rights of People with Disabilities
Posted: Saturday, February 25, 2017 6:55 PM
Joined: 7/24/2015
Posts: 3020

‘Nothing About Us Without Us’ Recognizing the Rights of People with Disabilities

The United Nations Speaks:

"Some 10 per cent of the global population is disabled as a result of mental, physical or sensory impairment, with approximately 80 per cent living in developing countries. The global disabled population is increasing, according to the World Health Organization (WHO). Population growth, medical advances that prolong life, war injuries, landmines, HIV/AIDS, malnutrition, substance abuse, accidents and environmental damage all contribute to this increase. It has become increasingly clear that persons with disabilities should be viewed as people who enjoy the full spectrum of political, civil, economic, social and cultural rights. Physical or social barriers limit their lives, often denying them access to essential services. This affects not only the disabled and their families but also the economic and social development of entire societies, where a significant reservoir of human potential goes untapped.

Considering that disabilities are frequently caused by human activities or a lack of care, assistance from the entire international community is needed to put an end to this “silent emergency”. Recognition has been slow, but it is steadily taking place in all parts of the world. The growth of the international disability movement, with its motto “Nothing About Us Without Us”, encapsulates this fundamental shift in perspective towards a principle of participation and the integration of persons with disabilities in every aspect of political, social, economic and cultural life. Commemorating the 2004 International Day of Disabled Persons, observed every year on 3 December, Secretary-General Kofi Annan stressed that “no society can claim to be based on justice and equality without persons with disabilities taking decisions as full-fledged members”.

There is no universally agreed definition of disability. It is now considered a socially created problem and not an attribute of an individual. The social perspective is reflected in the WHO International Classification of Functioning, Disability and Health, which defines disability as a universal human experience and not the concern of a minority; every human being can suffer from a health loss and thus experience some disability. The old “medical model” of disability has been replaced by a human rights model, in recognition of the fact that it is society that is “disabling” people with disabilities by making it difficult for them to exercise their human rights. The changing nature of disability and the realization that it was an inevitable part of the life of any individual or society require that the concept of disability be related to the issue of human dignity.

There is still no global treaty to protect the rights of people with disabilities, who are only implicitly covered by existing human rights treaties. Among the eight UN core treaties, only the Convention on the Rights of the Child makes explicit reference to children with disabilities. Declarations and principles that address the rights of the disabled are legally non-binding and are considered inadequate by many disability advocates, reflecting a change in the way societies view themselves and promote integration of the disabled. As the world ages, the number of people with disabilities is expected to increase, underscoring the importance of a new treaty.

In 2001, President Vicente Fox of Mexico proposed to the UN General Assembly the drafting of the first-ever convention on the rights of people with disabilities. The Assembly established an Ad Hoc Committee to prepare “a comprehensive and integral international convention to protect and promote the rights and dignity of people with disabilities”. Like all international conventions elaborated through the United Nations, the 191 Member States are the main drafters of the treaty, which will have the force of law for those countries that ratify it. Chaired by Ambassador Luis Gallegos of Ecuador, the Ad Hoc Committee recently completed its fourth session and issued its report to the General Assembly.

Mr. Gallegos said that the challenge of the convention was to articulate a human rights framework and accompanying practices that would translate disability-specific needs into the legal provisions of a treaty. He said that the broad consultative process among all stakeholders, as well as the working partnership between Governments and disabled persons’ organizations, were essential to the success of the convention. Mr. Gallegos emphasized that despite the complex nature of the issue, negotiations had created a momentum that, he hoped, might make it possible for the treaty to be ready for adoption by the General Assembly in September 2005, in time for the review of the implementation of the Millennium Development Goals. “If we miss that mark”, he said, the dynamics of the process would be lost and “it will take us much more time”. The Ad Hoc Committee’s next session is scheduled for 24 January to 4 February 2005.

When adopted, the draft Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities would create a legally binding framework within a single universal instrument, establishing persons with disabilities as “rights holders” and “subjects of law”, with full participation in formulating and implementing plans and policies affecting them. It would also promote an understanding of “disability”, changing the way societies view people with disabilities."

Discrimination Against People with Disabilities

"Persons with disabilities often are excluded from the mainstream of society and denied their human rights. Discrimination against them takes various forms, ranging from the denial of opportunities to segregation and isolation, because of the imposition of physical and social barriers. Effects of disability-based discrimination have been particularly severe in such fields as education, employment, housing, transport, cultural life and access to public places and services. This may result from distinction, exclusion, restriction or preference, and denial of reasonable accommodation on the basis of disablement, which effectively nullifies or impairs the recognition, enjoyment or exercise of the rights of persons with disabilities.

The consequences of disability are particularly serious for women, because they are discriminated against on the double grounds of gender and disability. Women are more exposed to the risk of becoming disabled because of neglect and certain forms of abuse and harmful traditional practices directed against them. They have less access to essential services, such as health care, education and vocational rehabilitation. They are also specially affected because they are often entrusted with the responsibility of caring for disabled persons in the community.

Despite some progress over the past decade, the human rights of persons with disabilities have not been systematically addressed in society. Most disability legislation and policies are based on the assumption that persons with disabilities simply are not able to exercise the same rights as non-disabled persons. Consequently, the situation of persons with disabilities is often addressed in terms of rehabilitation and social services. More comprehensive legislation is needed to ensure their rights in all aspects on an equal basis with persons without disabilities. Appropriate measures are required to address existing discrimination and to promote opportunities for the disabled to participate on an equal basis in social life and development.

There also are certain cultural and social barriers that have served to deter full participation of persons with disabilities. Discriminatory practices against them may be the result of social and cultural norms that have been institutionalized by law. Changes in the perception and concepts of disability will involve both changes in values and increased understanding at all levels of society, as well as a focus on those social and cultural norms that can perpetuate erroneous and inappropriate myths about disability."


Posted: Saturday, February 25, 2017 7:10 PM
Joined: 7/24/2015
Posts: 3020

I add this because it is very often (more often than should be) overlooked, here and elsewhere, in our lives. 

Just because we are dx'd with dementia...or on our way of being dx'd dementia...does NOT mean that we stopped being people in our own rights, with our own feelings, with our own thoughts. 

As long as we are able communicate, we should be allowed dictate our care and what we want in terms of our care.  For example, we have the RIGHT not tell our children (or spouses) what is going on with us - if we don't want do.  That does NOT mean that we are in denial, or that we have agnosia (or however you spell it - a term that is sooo offensive me, and is sadly VERY overused in dementia care in order deny us our rights autonomy, and as an excuse take over our lives) just means that we don't want talk about it with that person. 

It means that you don't get tell us....but rather we going tell you. 

It means, ASK, don't assume. 

It means that ANY organization, group, or mission that did NOT include US at the core of its decision making (meaning, we NOT siting on their decision making board) - does NOT speak for us.  So all that "dementia friendly" "validation" "fiblets" crap - no matter how well endorsed by people who are NOT dx'd with dementia - are NOT dementia approved. 

It means as long as you continue use language that demeans, devalues, and depreciates us or our rights or our values - it is NOT good for PWD. 

It means, re-able us....rather than further dis-able us. 

It means treating us as people first.

It means granting us equal access the world.

It centers on our right prompt diagnosis, and treatment....and access support groups (not structured activities hosted by those who afraid us or think they have babysit us).  It centers on RESPECT...the same respect you'd give any other human in society. 

It means that the Young Onset Section NEEDS be a safe place talk about what WE going through and get support from those similarly dx'd. 

And of course the list could go on...but you get the point. 


Posted: Saturday, February 25, 2017 9:10 PM
Joined: 7/24/2015
Posts: 3020

Author and fellow PWD, Christine Bryden writes book, Nothing About Us Without Us 20 Years In Dementia Advocacy....for those you interested in the history this:

"Advocating for dementia for 20 years, Christine Bryden has been instrumental in ensuring that people with dementia are included in discussions about the condition and how to manage and think about it. This collection of her hard-hitting and inspiring insider presentations demands ‘nothing about us, without us!’ and promotes self-advocacy and self-reflection."

Posted: Saturday, February 25, 2017 9:13 PM
Joined: 7/24/2015
Posts: 3020

Dementia Alliance International or DAI also takes up Nothing About Us Without Us....


"Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us."