Sárközi, who prefers to be called Tonyo, is working toward his dream. Well-spoken, convincing and very sociable, the 36-yearold was born with a mild intellectual disability. He wants to help people like himself. Tonyo is a representative for disabled persons in his district – municipal duties that include monitoring their rights and attending monthly meetings. The green-eyed advocate would also like to become more involved in politics, and he views himself as a kind of ambassador to those with handicaps. Tonyo plans to build a foundation focusing on the rights of the disabled. It is still in its preliminary stages, but when asked about concrete plans, he pulls out a thick stack of business cards, each bearing the name of a person who has promised to help him, later.

Tonyo, the advocate

“I want to help them so that they don’t have to live through the same things that I did,” he explains. Taken by the state from his abusive adoptive parents when he was 14-yearsold, Tonyo spent more than half his life in a large state institution. His recollections are mostly fond, although there are certain aspects of his institutionalization he prefers not to discuss. After the death of his favorite caregiver, or mentor, Tonyo felt alone among the other 200 residents and began lobbying for his release. He returned home four years ago.

He admits it was difficult to deal with being on his own, but with some state-provided guidance and constant trial and error, Tonyo has learned to better maneuver his way in society outside a state institution. He is determined, and his dream is to give those with disabilities, including himself, a more uplifting future.

“I know that many of them don’t have the chance to learn, work and live like I do, and I want to change that. Plus,” he adds with a grin, “I need to keep myself busy.”

Tonyo’s ambitions are high, yet whether his dream will take flight depends greatly on the actions of others and how they perceive him. Up to now, Hungarians living with disabilities were largely marginalized and treated in a medical and rather patriarchal way. Often, doctors solely decided the fate of those with disabilities, prescribing drugs and keeping the disabled out of sight in large institutions located outside cities.

The desire for integration

In recent years, a growing number of nonprofit organizations (NGOs) and national programs have made it possible for people with disabilities in Hungary to take more of a stand for themselves. Many want to work, lead normal lives and become integral members of their community. This self-advocacy undoubtedly stems from public debate on anti-discrimination and equal opportunity - now popular issues on Hungary’s national agenda.

While NGOs and advocacy groups can work and progress within the European Union’s new anti-discrimination law, much still needs to be done before people like Tonyo become fully integrated. According to 2002 figures, Hungary’s national unemployment rate stood at 7 percent. The same rate for those with disabilities was 91.5 percent.

Reducing the gap requires a drastic change in mentality. If society were to gain patience and acceptance, people with disabilities would in turn feel more secure and confident, says Tonyo, who adds he is apprehensive about working with healthy people. When he left the institution four years ago, he spent a year packaging napkins in a sheltered working environment. There, he felt he and his colleagues were taken advantage of, and even excluded. This experience left Tonyo pessimistic about re-entering the “regular” workforce. An effective infrastructure of communitybased support needs to be developed, experts say, a national network in which people like Tonyo can feel comfortable in and flourish.

Current inclusion projects do exist. One focuses on the removal of physical barriers by providing wheelchair access and specialized tools for working. These should be implemented by 2005, along with improved methods of communicating information, such as more sign language services and easyto-read documentation. Reasonable accommodation is a crucial part of integration, yet in order to achieve full inclusion, an entire new field of work, comprised of social workers, occupational therapists, psychologists and other specialists trained in disabled affairs must be introduced.

Infrastructure not suitable

The Labor Office of Budapest (FMK) is one agency not yet equipped to help people with mental disabilities find jobs. Eva Várkonyi, who works in FMK’s rehabilitation department, explains that while all people with disabilities fall under the category of those “whose labor potential has been altered,” those with mental conditions are referred to other, more appropriate services.

“If someone is blind, or in a wheelchair, for example, it’s much easier to determine their special needs and capabilities than someone who has an intellectual disability,” says Várkonyi. She estimates that about 20 percent of unemployment cases that go through the rehabilitation department concern people with mental disabilities.

Várkonyi says she hopes her department can better handle these cases in coming years, but for the time being they are contracted out to organizations such as the Salva Vita or Motiváció foundations, agencies specializing in assisting disabled persons.

The Salva Vita Foundation has existed for more than 10 years and is one of few groups in Hungary working to find long-term employment for the mentally disabled on the open labor market. The Budapest-based organization offers “supported employment” services adapted to fit Hungarian needs. After much success, the foundation’s integration method – backed in part by the Ministry of Labor – is being used in four other cities throughout the country.

According to Attila Kelemen, communications manager at Salva Vita, Hungarians with disabilities are employed on the open market to a much lesser degree than those with disabilities working in Western EU countries – up to four or five times less.

Saving taxpayer dollars

“Our goal, of course, is to reach EU standards,” Kelemen says. “Employment is the key to full integration. If people with intellectual disabilities work and make their own money, then they become consumers, users of public transportation, active members of society. Even if we would have to spend one year to train someone, it would be worth it financially. This person might then go on to work for the next 20 years, a period of time in which state support can be decreased considerably.”

Andrea Rankó, program manager at Salva Vita’s employment service, describes the foundation’s procedure: a training and assessment period between four and five weeks, during which the individual is given a chance to hone their social skills and learn some of the basics needed to tackle the job market. By building a one-on-one relationship with one of the organization’s social workers, or job coaches, the individual feels comfortable and gains self-reassurance. Based on his personal needs, strengths and capabilities, the individual is then given the opportunity to try different things, such as gardening, cleaning and factory work, in a real working environment.

In the meantime, a job coach attempts to rid the individual’s immediate surroundings of any problems that might exist and impede in finding and keeping work, such as health and family issues, paperwork or unpaid bills. This behind-the-scenes aspect of integration is crucial for one to concentrate on moving forward and requires specialized attention.

Once a suitable type of work has been determined by the job seeker and job coach, an employment search begins. Normal advertisements are answered and the job coach assists in contacting employers.

Rankó admits that employers are often apprehensive, and since the concept of inclusion is fairly new, few companies have had the chance to work with the mentally disabled. Dissolving stigmas by creating personal contact is important. In the end, Rankó says she typically receives positive feedback from the employer and employee.

Out of an estimated 160 disabled persons who turned to Salva Vita, about 80 began the procedure, resulting in the secure job placement of about 20 people per year. Although the numbers seem small, the focus on permanent inclusion underlies how difficult the task is. There is currently a waiting list for Salva Vita’s services, which demonstrates the need for growth in this field.

Hungary must now pick up the pieces. Drastic changes in the workplace are not expected to happen quickly, however, as the majority of those with mental disabilities must first have access to inclusive education from an early age. This would then facilitate their entry into the open workforce. The speed at which this will happen depends greatly on political will and whether society will ignore stigmas attached to people like Tonyo. Financial incentives do exist, however, and employers who hire disabled workers can often claim tax benefits.

In theory, any company with more than 20 employees must reserve 5 percent of their workforce for persons with disabilities. For each disabled worker, employers are entitled to a 45 percent return on a disabled worker’s minimum wage. If a company’s staff is comprised of more than 60 percent disabled, tax refunds rise to 135 percent of minimum salary. This incentive seems impetus enough to hire such workers, yet too often employers omit or neglect the special needs and rights of their disabled employees. Largely because of this, the guidelines for the amount of subsidies received are currently under review.

Jurisdiction of multiple ministries

Initiatives for the disabled remain complicated by the fact they fall under the jurisdiction of many different ministries. The Ministry of Equal Opportunities was designed to coordinate affairs and ensure the rights of those like Tonyo, yet it is still adjusting to its new role. Mónika Mádai, a civil representative within the National Council of Disabilities, confirms the effect the instability of administration has had on progress.

“The Council just recently got transferred to the Ministry of Equal Opportunities, from the Ministry of Social and Family Affairs. Just as we were getting settled,” she says, “the head of the ministry changed. At least things are down on paper and we’ve started making progress, yet nothing seems stable. How to deal with each issue is still up in the air and the government’s true intentions remain to be seen. And now with the new elections …”

Although slightly frustrated, Mádai says she is pleased there is more civil participation on the Council. Overall, she is optimistic changes will eventually come.

Tonyo says he would also like to collaborate and help things evolve, yet the surroundings don’t always make it easy to stay motivated. He has been sent down an unlit path, too trusting perhaps, with obstacles blocking his way. Bounced around and jaded by his past, Tonyo believes he can only make a worthwhile difference by targeting those at the top.

“Sometimes I think of quitting politics, but I really don’t know,” he says, exasperated. “I am tired of yelling and arguing all the time. I fight and I argue for our rights and nothing ever happens.” Tonyo resembles a real defender of the working class.

“In reality,” he adds, “I just want them to respect us, too.”