Way to Independence

Tirana May 2008 

Lulieta Rugji is a former institutionalized woman with physical disability who spent almost 20 years of her life in residential institutions. She was an excellent swimmer at her 20ties, and her brother too, but after both of them got muscular dystrophy and since than they lived in separated residential care settings.

After the communist regime collapse, many state-owned residential institutions deteriorated at the point that they were closed and Lulieta finished in the psychiatric hospital of Tirana although her diagnosis had nothing to do with the service of psychiatry.

After some years, the hospital authorities decided to discharge Lulieta from the hospital without designating a place for her where to go, so, one day, she found herself at the gate of hospital told to leave from there. Without family support that she lost some 20 years ago, and without knowing where to go, she felt desperate to death. Finding Lulieta on the road, Brigit, a maintenance hospital staff, who had finished her job shift, decided to take Lulieta for sometime in her ‘home’, which was one room only, and where Brigit was living with her son as a single mother. Lulieta lived in this room for another 10 years.  

Being out of institution, Lulieta got in contact with other people with disabilities; she heard that some of them had created their clubs, groups and organizations. She decided with a group of women and men with muscular dystrophy to create their organization called “Hope for Life”. Since then, she has been very active to voice the problems and barriers that society has put against people with disabilities. 

Through Share See project in Albania, Lulieta heard about other DPOs in the region. Her main surprise was the concept of Independent Living (IL), she heard during the training sessions of Share See. Through the exchange program of Share See, Lulieta went in Serbia to see how the philosophy of IL worked out at CIL Serbia. The Philosophy of IL means that disabled people are demanding to live like any body else, and t have same opportunity to make a choice, bring their own decisions on issues of their own lives, to control services that are provided for them and to take responsibility for the life they want to live. It also means that the society needs to provide conditions for disabled people to achieve IL, including support services, accessibly housing and transport, employment and sustainably income.  She meet there new friends, like Gordana  and Borivoje, who were leading the CIL and with whom she talked about IL and visited the center. 

While she came back to Albania, she spread the word to her friends about the IL and CIL. So, many DPOs asked to know more about IL and Share See organized a three days seminar on IL, in Tirana, where the trainers were Gordana and Borivoje. Being told and trained on IL by two PWD was another surprise to Albanian PWDs who until then have seen in front of them only trainers without disabilities.  These exchanges of ideas and experiences within Share See project, especially the contact with CIL, resulted in a great knowledge benefit for Lulieta and her DPO.

Since then, they have been working to spread out the idea of IL and lately they have set up the first CIL in Albania which will be a lab to experiment IL under local conditions. They do still have to learn a lot by CIL Serbia and other CILs experiences to provide themselves better chances to achieve independent living and live independently a life with dignity.

On Empowerment

 “Empowerment”… what is it?

Empowerment is when we who have disabilities reject stereotyped roles of eternal childhood, failure and subservience… when we say “no” to the big lie that we can trust paternalistic authority to give us equality and the good life.

Empowerment is when we are enabled to take control of our own lives and to participate as equals in controlling government and the programs that affect us. Empowerment is when we take full responsibility to utilize all of our abilities to produce a life of quality for ourselves, for our families, and for our communities.

Empowerment is when the rehabilitation counselor, the teacher, the employer, takes the approach of a good coach or of a good attorney – working in partnership with each individual client to create a customized program designed to enable that individual to achieve what that individual wants to achieve. 

Empowerment is what we do for top company executives, national leaders, soldiers and doctors when we really need those people to protect our money, our liberty, and our lives. Colleagues, the empowerment society will not occur until we understand that the responsible leaders are all of us – that the disabled can be any of us – and that the productivity and quality of life of the person with mental illness or deafness, are just as important to our pocketbooks and to our happiness as the productivity of the President of Coca Cola and the quarterback of the Washington Redskins.

Justin Dart, Jr

Assistive Technologies

About Dexterity Difficulties and Impairments

Individuals with dexterity difficulties experience pain, discomfort, or complete loss of feeling in their fingers, hands, wrists, or arms, making it difficult to use a standard keyboard or mouse. Among adult computer users in the United States, 1 in 4 (26%) have a dexterity difficulty (see study). Dexterity difficulties and impairments can be caused by a wide range of common illnesses and accidents such as carpal tunnel, arthritis, stroke, cerebral palsy, Parkinson’s disease, multiple sclerosis, loss of limbs or digits, spinal cord injuries, and repetitive stress injury, among others.

Assistive Technology

Products compatible with Microsoft® Windows® operating systems, made by independent assistive technology manufacturers, are included in the assistive technology catalog. People who have dexterity difficulties and impairments may be interested in the following assistive technology:

  • Speech recognition systems, also called voice recognition programs, allow people to give commands and enter data using their voices rather than a mouse or keyboard.
  • On-screen keyboard programs provide an image of a standard or modified keyboard on the computer screen. The user selects the keys with a mouse, touch screen, trackball, joystick, switch, or electronic pointing device.
  • Keyboard filters include typing aids, such as word prediction utilities and add-on spelling checkers. These products reduce the required number of keystrokes. Keyboard filters enable users to quickly access the letters they need and to avoid inadvertently selecting keys they don’t want.
  • Touch screens are devices placed on the computer monitor (or built into it) that allow direct selection or activation of the computer by touching the screen.
  • Alternative input devices (including alternative keyboards, electronic pointing devices, sip-and-puff systems, wands and sticks, joysticks and trackballs) allow individuals to control their computers through means other than a standard keyboard or pointing device.

Wishes could come true

My name is Julijana Kocis. I live in Sombor and I was born with severe disability having Cerebral Palsy. I could not use my arms, my legs – I am only using my head. But since childhood I was eager to learn all that could be learned even I could not go to regular school. My mother helped me in all my attempts to gain as much knowledge as I can. In the age of 22 I have got typing machine from my grandmother. I did typewriting holding plastic stick, 20 cm long, in my mouth.

Still, as severely disabled person there was not so many other possibilities for my development, especially in the area of my interest. With the technology era and computers appearance I realise that my greatest wish is to have one.

Sometimes when it seems that we are in the corner of a life, suddenly some light start shining on us and new hope is there…

At that time, almost year ago, my 80 years old mother could not help me any more due to her illness. I was involved in project From alternative to standardisation implemented by Center for Independent Living Serbia and has got personal assistant. My life become joyfull and more qualitative.

I am telling all of this, as this was the way which led me to my PC. The idea how to have PC actually came from my personal assistant. We agreed to advertise in local newspaper and ask if someone would like to donate one PC I would be happy for that!!! Friends of my PA who are working in this newspaper wrote the text and we was waiting… Later on fe found out that this text was never published but the idea was spread between friend of a friends and „the secret plan was made“.

A month latter my peersonal assistant told me the news and I could not belived – I was told that one computer should be „on my desk“ very soon! Everything was like a dream and that dream was realised by two young men, who would like to stay anonimous but to make my dream come true. I am happy knowing that there are such a good people having my gratitude eternally.

My organisation for CP provide me komputer training and I was very good student. I use specially designed mouse to manage it with my beard and I am writing with the same plastic stick, I used on my typing machine. I am using e-mail, WORD program, contacting with my friends on MSN and SKYPE, listening music and watching CD movies. I have my window to the world and I am feeling like a citizen of the world because I am using Internet and nothing is inaccessible for me now.

Here, this is my story and I am glad to share it with all of you who would read it. I will be glad to know that some other person is having similar story. My life now is much more qualitative and filled with different nice issues.

Press Conference

Ombudsman in Republic of  Serbia organise Press conference celebrating two years of adoption of the Law prohibiting discrimination of persons with disability. Conference is taking place on 24 of April 2008 in Media Centre, SAVA Center.

Speakers on the Conference will be:

Sasa Jankovic, Republic Ombudsman

Gordana Rajkov, MEP

Damjan Tatic, UN Expert

Ivanka Jovanovic, National Organisation of DPOs

Ljiljana Lucic, Secretary general for social affairs at Ministry for Labor and Social Policy

Mobility International Seeks Young Adults

Mobility International USA is currently recruiting young adults, ages 18-24, to participate in a unique 16 day cross cultural/ cross disability leadership exchange program to Costa Rica June 27, 2008-July 12, 2008. Interested students can find out more about the program at http://www.miusa.org/exchange/costarica08/index_html. The applications are being accepted as space permits. Generous scholarships are available and ASL Inpretrers and Personal Assistants are provided as needed! 

National Conference on Gender Equality

Sector for gender equality at Ministry for Labor and Social Policy, organised on 22 of April National Conference on gender equality and women participation in public life.

The aim of the Conference was to highlight the importance of improvement of gender equality in Serbia through adoption of Law on gender equality and National Strategy on improvement the status of women.

Gorjana Gordic  represented Center for Independent Living on this conference.

Seminar on reforms of social protection system

Organisation of experts in social protection organised seminar on reforms of social protection szstem in Serbia. Seminar is taking place on Divcibare from 22 until 24 of April named „Towards to quality system in social protection“.

Center for Independent Living Serbia will represent Gordana Rajkov with the presentation on personal assistant service for persons with disabilities.

Wal-Mart settles with applicant with disability [USA]

Dated: 17 Apr 2008

Wal-Mart Stores Inc. will pay $300,000 to settle a lawsuit filed on behalf of a job applicant who claimed he wasn’t hired because he has cerebral palsy, the Equal Employment Opportunity Commission said Thursday. Steven J. Bradley Jr. of Hardin in northwest Missouri applied for a job at a…store…in 2001… Bradley claimed he was questioned during an interview about his ability to work using his wheelchair… Ultimately, he was not hired. The EEOC lawsuit claimed the world’s biggest retailer violated the Americans with Disabilities Act… Wal-Mart agreed to provide ADA training to managers at its Richmond store…and inform several Kansas City-area job service agencies that the company seeks to employ qualified persons with disabilities.

First Contestant with a Disability to Compete for Miss USA Title

LAS VEGAS (CBS) –  The Miss USA pageant gets underway Friday night in Las Vegas, and while it’s a dream come true for all the contestants, it’s a heroic accomplishment for one participant in particular.  

Miss Iowa, 20-year-old Abbey Curran, made it a longtime goal of hers to compete in a pageant that some may have thought would never be possible.

“This is such a dream come true, bigger than a dream come true would be,” she says. It’s a dream that’s bigger for Curran because the college sophomore has cerebral palsy, a neurological disorder.

INFO – CENTER

Info – center was established that citizens could gain information on rights from different areas. 

Telephone numbers in Info – center are: 

Social and family legal protection 011/303-86-61

Persons with disabilities and disability protection 011/303-86-77 

Violence in family 011/303-86-61 

Labor and labor inspection 011/303-86-77 

Pension and disability insurance 011/334-78-09 

Working time of Info – center at Ministry for Labor and Social Policy is from 9 -15 hours.

INACCESSIBILITY IS DISCRIMINATION!

The March for Accessibility (the demonstration) will be held for the 6th time on Saturday May 24th in Stockholm, for the second time in Askersund and Göteborg and for the first time in Jönköping, Karlskoga, Ljusdal, Malmö and Norrköping. More cities to follow.

Times: Gathering 13.00 (1 pm), marching time 14.00 (2 pm), the march takes about 1 hour

1: What is the background of the march?
The background of the march lies in the American disability advocacy group ADAPT’s “Free Our People March” in 2003, an event aimed at enacting the MiCASSA – an equivalent of the Swedish laws granting people with disabilities the right to attendant cares. Compared to Sweden, the US does not lack an anti-discrimination law (ADA (Americans with Disabilities Act)).

2: Why is a law that defines inaccessability as discrimination necessary?
Theoretically, everyone agrees on a society accessible for everybody, but there is a giant gap between intention and reality. Media and public opinion, as well as politicians and other policymakers, have to be made conscious of the seriousness of the situation in Sweden. Everyone must be able to cross a street or to visit websites, to go see a movie or eat out with his/her spouse, children, parents, friend and so on – in short: everyone must be able to live their lives just like everybody else, no matter if they have a disability or not.

In Sweden, there is already strong legislature intended to make society accessible. The problem is that the present laws are not followed. Some laws were enacted several decades ago. For instance, a law on making public transportation accessible was enacted 1979, but not much has happened since then. Why? Swedish legislation lacks means of sanctioning. If a public transit company doesn’t make their buses accessible with lifts (for instance for people who use wheelchairs) or loud-speaker exclamations (for instance for people with reading disabilities or visual impairments), the company won’t face any punishment whatsoever. The only effect it will have is some possible bad PR within the disability movement. According to law, inaccessibility in Sweden is not defined as discrimination. It has to be! An antidiscrimination act that defines inaccessibility as discrimination would link the inaccessibility on an individual level. Individuals are affected by the inaccessibility. Thus, it is there the means to intervene against the companies, shops, communities, ministries and so on that won’t follow the legislation has to be.

In several other western countries, laws that prohibit companies, authorities and “communities” from having inaccessible enterprises exist. Some examples are:

USA – Americans with Disabilities Act – shortened ADA (1990)
Australia –
Disability Discrimination Act – shortened DDA (1992)
Great Britain –
Disabilitity Discrimination Act – shortened DDA (1995)
South Africa –
The Promotion of Equality and the Prevention of Unfair Discrimination Act – shortened PEPUDA or Equality Act (2000)

In Sweden, an investigation about if something similar should be implemented is in process. Since July 1st 2003, there is a general Swedish antidiscrimination act which protects from discrimination due to ethnic heritance, religion or other beliefs, sexual preference and – disability. Still, inaccessibility is not defined as a basis for discrimination. We believe it should be a matter of course in Swedish legislation.

3: What is The March for Accesibility?
“Marschen för tillgänglighet” is Swedish and translates The March for Accessibility. It is an organisation advocating the enactmentent of a law into Swedish legislation, which defines inaccessibility as discrimination of people with disabilities. While Sweden does recognize the need for attendants for people with disabilities, inaccessibility remains a serious issue in contemporary Swedish society

Every year, we organize a demonstration in support of our cause in central Stockholm, the capital of Sweden. The demonstration bears the same name as our organiztion. The first march (i.e. demonstration) was held August 16th 2003. About 600 persons marched 5 km (about 3 miles) from Wenner-Gren Center (Norrtull) to Mynttorget (The Parliament building) in central Stockholm.

The second March for Accessibility was held August 21st 2004, with the same march route.

The third March for Accessibility was held August 20th 2005. The route was the same as the previous years.

The fourth March for Accessibility was held May 20th 2006. The route was shortened to go from Observatorielunden (Sveavägen 67) to Mynttorget.

The fifth March for Accessibility 2007 (the demonstration) was held on Saturday June 2nd in Stockholm, and for the 1st time in Gothenburg, Helsingborg and Askersund.

4: Who support us?
More than 120 organizations and companies, representing over 610 000 people (Sweden’s population is 9 million), support us.

5: What can I do to help?
As an individual, you can
sign our petition

The March for Accessibility (the demonstration) will be held for the 6th time on Saturday May 24th in Stockholm, for the second time in Askersund and Göteborg and for the first time in Jönköping, Karlskoga, Ljusdal, Malmö and Norrköping. More cities to follow.

Times: Gathering 13.00 (1 pm), marching time 14.00 (2 pm), the march takes about 1 hour

1: What is the background of the march?
The background of the march lies in the American disability advocacy group ADAPT’s “Free Our People March” in 2003, an event aimed at enacting the MiCASSA – an equivalent of the Swedish laws granting people with disabilities the right to attendant cares. Compared to Sweden, the US does not lack an anti-discrimination law (ADA (Americans with Disabilities Act)).

2: Why is a law that defines inaccessability as discrimination necessary?
Theoretically, everyone agrees on a society accessible for everybody, but there is a giant gap between intention and reality. Media and public opinion, as well as politicians and other policymakers, have to be made conscious of the seriousness of the situation in Sweden. Everyone must be able to cross a street or to visit websites, to go see a movie or eat out with his/her spouse, children, parents, friend and so on – in short: everyone must be able to live their lives just like everybody else, no matter if they have a disability or not.

In Sweden, there is already strong legislature intended to make society accessible. The problem is that the present laws are not followed. Some laws were enacted several decades ago. For instance, a law on making public transportation accessible was enacted 1979, but not much has happened since then. Why? Swedish legislation lacks means of sanctioning. If a public transit company doesn’t make their buses accessible with lifts (for instance for people who use wheelchairs) or loud-speaker exclamations (for instance for people with reading disabilities or visual impairments), the company won’t face any punishment whatsoever. The only effect it will have is some possible bad PR within the disability movement. According to law, inaccessibility in Sweden is not defined as discrimination. It has to be! An antidiscrimination act that defines inaccessibility as discrimination would link the inaccessibility on an individual level. Individuals are affected by the inaccessibility. Thus, it is there the means to intervene against the companies, shops, communities, ministries and so on that won’t follow the legislation has to be.

In several other western countries, laws that prohibit companies, authorities and “communities” from having inaccessible enterprises exist. Some examples are:

USA – Americans with Disabilities Act – shortened ADA (1990)
Australia –
Disability Discrimination Act – shortened DDA (1992)
Great Britain –
Disabilitity Discrimination Act – shortened DDA (1995)
South Africa –
The Promotion of Equality and the Prevention of Unfair Discrimination Act – shortened PEPUDA or Equality Act (2000)

In Sweden, an investigation about if something similar should be implemented is in process. Since July 1st 2003, there is a general Swedish antidiscrimination act which protects from discrimination due to ethnic heritance, religion or other beliefs, sexual preference and – disability. Still, inaccessibility is not defined as a basis for discrimination. We believe it should be a matter of course in Swedish legislation.

3: What is The March for Accesibility?
“Marschen för tillgänglighet” is Swedish and translates The March for Accessibility. It is an organisation advocating the enactmentent of a law into Swedish legislation, which defines inaccessibility as discrimination of people with disabilities. While Sweden does recognize the need for attendants for people with disabilities, inaccessibility remains a serious issue in contemporary Swedish society

Every year, we organize a demonstration in support of our cause in central Stockholm, the capital of Sweden. The demonstration bears the same name as our organiztion. The first march (i.e. demonstration) was held August 16th 2003. About 600 persons marched 5 km (about 3 miles) from Wenner-Gren Center (Norrtull) to Mynttorget (The Parliament building) in central Stockholm.

The second March for Accessibility was held August 21st 2004, with the same march route.

The third March for Accessibility was held August 20th 2005. The route was the same as the previous years.

The fourth March for Accessibility was held May 20th 2006. The route was shortened to go from Observatorielunden (Sveavägen 67) to Mynttorget.

The fifth March for Accessibility 2007 (the demonstration) was held on Saturday June 2nd in Stockholm, and for the 1st time in Gothenburg, Helsingborg and Askersund.

4: Who support us?
More than 120 organizations and companies, representing over 610 000 people (Sweden’s population is 9 million), support us.


5: What can I do to help?
As an individual, you can sign our petition and also tell your friends to support us.