Lesley Davis: Disability awareness Living with a disability means ‘a crazy amount of new stuff to learn’ 

There is a certain shock value when I tell people about my encounter with Guillain-Barre Syndrome eight years ago: “One day I was fine, and the next day I was completely paralyzed.”

GBS is a relatively uncommon, non-inherited, auto-immune syndrome in which one’s body overreacts to a perceived threat, usually a virus.
The results can vary from slight weakness in the extremities to temporary partial or total paralysis.

It is a medical mystery why some people get GBS and others do not.
In very severe cases like mine, recovery is not always complete, resulting in limited mobility. I use a wheelchair most of the time.

I am grateful for the Americans with Disabilities Act, because of which most places in the U.S. are wheelchair-accessible; for Vocational Rehabilitation Services, because of which I was able to afford a wheelchair-accessible van; and for friends, family, colleagues and even total strangers who make my life as rewarding — and sometimes even more rewarding — than it was before I became disabled.

Lesley Davis

Lesley Davis


Here are two of the many things I have learned in my years living with a disability, things I would never have learned otherwise:

1. People stay stupid things.
Many able-bodied people tell me that they could never “do what I do” or “stay so positive” in the face of what they imagine must be a greatly diminished existence. They might even go so far as to say that they don’t know how they could carry on with their lives if they had to be “confined to a wheelchair” like, well, me. In my experience and in the experience of other disabled friends, we don’t want sympathy or, even worse, pity, and we really don’t like to be told we are “confined” to anything.
None of us knows how we will cope with a major life challenge such as a disability until it happens—and it happens to more and more of us as life expectancies increase, as wars wreak havoc on bodies and as medical technology advances.
As of 2011, 36 million Americans (12 percent of the population) had one or more disability. Thirty-seven percent of adults older than 65 have at least one disability.
The odds are excellent that you or someone you love will live with a disability eventually.

I feel sorry for people who are so sure that they couldn’t handle living with a disability, and I’d like to think most of them are wrong about themselves.
In my experience, living with a disability is so much more tolerable when you embrace it rather than lament it or rage against the “unfairness” of life.

2. Adversity invites opportunity.
My disability has led me to see that there is a crazy amount of new stuff to learn, something that’s easily forgotten as we get older.

As a result of spending 10 months in the hospital and in a rehab center, I have learned what it takes to convince an insurance company, Medicare or Social Security to see things my way (and their default positions to the contrary); I have learned a lot about what makes a good doctor (admitting what they don’t know as important as asserting what they do know); and I have learned that those who can’t advocate for themselves or have someone to advocate for them in medical settings are frighteningly disadvantaged.

As a result of spending most of my time in a wheelchair or using a walker, I have learned a lot about engineering and ergonomics. Because of my disability and my interest in mobility devices, I now act as a consultant and product tester for a revolutionary new power wheelchair and for a disability travel initiative.

This summer, I’ll be meeting with the Senate Majority Leader to discuss increasing access to new technologies and mobility devices for physically disabled people.

I get to do these things.

I get to help other people live better, happier, healthier lives.

And I get the best parking.

Posted: Monday, June 16, 2014 4:00 am | Updated: 7:22 am, Mon Jun 16, 2014.
Special to the Herald-Times
This guest column was written by Lesley Davis.

EU fully committed to protecting persons with disabilities, says Commission report on UN Convention

The European Commission published today its first report on how the EU is giving effect to the UN Convention on the Rights of Persons with Disabilities (UNCRPD). This Convention is the first international legally binding instrument setting minimum standards for a range of civil, political, social, economic and cultural rights for people with disabilities around the world. It is also the first comprehensive human rights convention to which the EU has become a party (IP/11/4). The publication of this report coincides with the launch, by the European Commission, of the 5th Access City Award competition – an annual prize recognising cities for their efforts to make it easier for disabled and older people to gain access to public areas such as housing, public transport or communication technologies (see link).

The European Union is fully committed to protecting and promoting the rights of people with disabilities in all areas of life, with all available means, from legislation to policies and from research to funding. The report issued today on the implementation of the UN Convention on disability rights is proof of that commitment“, said European Commission Vice-President Viviane Reding, the EU’s Justice Commissioner. “People with disabilities still face too many barriers in everyday life, which is why we have placed accessibility at the centre of our strategy for building a barrier-free Europe. The European Commission wants to ensure that people with disabilities can enjoy their rights on an equal basis with all other citizens.”

Around 80 million people with disabilities live in the EU and are still vulnerable to discrimination, stigmatisation and social exclusion. The UN Convention, ratified by the EU in January 2011, is filling an important protection gap in international human rights law, as it recognises disability as a legal issue rather than a mere welfare matter.

All 28 Member States have signed the Convention and 25 of these have ratified it, while the remaining three (Finland, Ireland and the Netherlandsare progressing towards ratification. EU Member States that have ratified the Convention need to periodically inform the UN Committee on the Rights of Persons with Disabilities about the measures taken to implement the Convention.

The report issued today describes how the EU has been implementing the Convention through legislation, policy actions and funding instruments. It addresses all rights and obligations enshrined in the Convention, from accessibility and non-discrimination to international cooperation and governance structures, and across a wide range of policy fields: from justice to transport, employment and education to information technology, development cooperation to humanitarian aid.

The report shows that the ratification of the Convention has tangible impacts on the ground in the EU:

  • In the area of justice, the 2013 Commission Recommendation on procedural safeguards for vulnerable people suspected or accused in criminal proceedings (IP/13/1157) makes explicit reference to the Convention to ensure that the needs of persons with disabilities are properly identified and addressed during the proceedings, for instance by providing them with information concerning their procedural rights in an accessible format.

  • The 2014-2020 regulatory framework for the European Structural and Investment Funds contains new, reinforced provisions and ex-ante conditionality criteria to make sure that investments are effectively used to promote equality, non-discrimination, social inclusion and accessibility for persons with disabilities through targeted actions and effective mainstreaming.

  • The new Directives on public procurement, adopted in 2014, make it necessary to take into accountaccessibility for persons with disabilities in most procurement procedures.

Background

The European Disability Strategy 2010-2020, adopted by the Commission in November 2010 (IP/10/1505), sets a concrete agenda of actions in the areas of accessibility, participation, equality, employment, education and training, social protection, health and external action.

One in six people in the European Union – around 80 million – have a disability that ranges from mild to severe. Over one third of people aged over 75 have disabilities that restrict them to some extent. These numbers are set to rise as the EU population grows progressively older. Most of these people are all too often prevented from fully participating in society and the economy because of physical or other barriers, as well as discrimination. People with disabilities face for example limitations in their right to free movement within the EU in particular due to a lack of mutual recognition of their disability status and related benefits, an obstacle recognised in the 2013 Citizenship report (IP/13/410).

Different national accessibility requirements for products and services affect the well-functioning of the single market, causing disadvantages for both businesses and consumers. For this reason, after consulting with stakeholders and industry (most recently in December 2013 IP/13/1192), the European Commission services are currently working on a European Accessibility Act. It aims to improve the functioning of the market of accessible mainstream products and services for the benefit of people with disabilities.

Almost half of Europeans consider discrimination on grounds of disability to be widespread in the EU and 28 % of Europeans with a disability say they have experienced such discrimination (Special Eurobarometer 393 – 2012). The average education, employment and poverty rates of people with disabilities are consistently and substantially worse than those for people without disabilities. People with disabilities in the EU have an average employment rate of 47 % (72 % for people without disabilities).

For more information:

European Commission – People with disabilities:

http://ec.europa.eu/justice/discrimination/disabilities/index_en.htm and

http://ec.europa.eu/justice/discrimination/disabilities/convention/index_en.htm

UN Convention on the Rights of Persons with Disabilities:

http://www.un.org/disabilities/

Homepage of Viviane Reding, Commission Vice-President responsible for Justice, Fundamental Rights and Citizenship:

http://ec.europa.eu/commission_2010-2014/reding/index_en.htm

Justice Directorate-General Newsroom:

http://ec.europa.eu/justice/news/intro/news_intro_en.htm

Follow the Vice-President on Twitter: @VivianeRedingEU

Follow EU Justice on Twitter: @EU_Justice

Source: http://europa.eu/rapid/press-release_MEMO-14-396_en.htm?locale=en 5 June 201
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