It all starts with trust. Do we really trust people with disabilities?


In Võrumaa, during the H2020 project CoSIE, active citizens, hard-working entrepreneurs,  qualified experts and officials have had meetings during social hackathons called Vunki mano! to shape better public services for everyone.

Kristina Amor, a project manager from Helpific, gives us an overview.

The goal that is close to Helpific’s heart in this project consists of including people with special needs in Võrumaa. We know that quite often these people are not ready to put their own ideas out on display, whether it’s because of their uncertainty about themselves or thinking that they can’t accomplish anything anyway. Or simply lacking motivation due to not being actively included in society from the get-go. Vunki mano! has been brought to life for the exact same reason—people can meet, brainstorm together, and accomplish something.

All events have had people with special needs present whether they already know and can be leaders and those who are still learning the art of creating change.

During the third meeting in Võru, the Golden Key work group was invited together by Tiia Järvpõld, who comes from Tartu county and paints with her toes.

She has taken it upon herself to develop the service of a personal helper for years now. Golden Key is a name given by her to refer to the personal helper service, which can result in a more independent life for people with special needs when the service becomes more reachable. The wish to inspire people with special needs and further educate people on the topic of how importance of the personal helpers motivated her to join the meeting. In the Golden Key team were the CEO of Estonian Association of Muscle Disease Jüri Lehtmets, Võrumaa Hearing Impairment Association board member Janno Kuus, Võrumaa Association of Muscle Disease member Tiia Savila, and many other active members.


Is anyone listening?

“During the meeting, I felt like a person in the midst of people. Not like that person with a disability, who someone else has to be responsible for and decide for,” says Järvpõld, who is the founder of MTO TM Creativity. She knows that the wish to be included starts from childhood. From whether you were included in activities as a kid, whether you were allowed to share your opinion, and if you were allowed to talk among others. Is someone really listening or are they just nodding their heads? The CEO of Estonian Association of Muscle Disease Jüri Lehtmets discussed one reason for being excluded – lack of support from close ones and family. “It might be surprising, but in many families where disability is present, the expenses for special transportation and personal helpers are considered a waste of money. They ask you whether you really need to go there, or what does it give you if you go there,” explains Jüri. She values self-discovery and a relentless attitude above all else.

A Golden Key work group member Piret Kahre took part in the meeting the second time because she values the opportunity to speak out to shape improved services. In her everyday job in unemployment services, she sees the struggles that people with disabilities have when trying to find a job—getting out and being active. It is important for her to value the job of a personal helper more and acknowledge it as a profession.

Kahre finds it extremely important that people with disabilities would want to be included, but also has the mental capacity to take part in that work. For example, during the first meeting, she brought a team that was developing job opportunities for people with mental disability. “The youth of our support center, weren’t directly included in the process of the meeting and in decision making, but these were made by their representative, who knows the nuances of mental disability well,” explains Kahre.

On the website of Vunki mano! it says that regular cooperation between Võrumaa Development Center, Helpific, Astangu Rehabilitation Center, and Võrumaa Unemployment Department helped to map the job finding process and taught participants a great deal about the problems that people with disabilities face. The dream still is to create an info day for employers — unfortunately the first attempt failed due to the lack of interest.

In spring in Antsla County, Kuldre whilst preparing for the fourth meeting, we found that there were more problems with accessibility in the countryside than in the city. Consequently, the organizing team made some changes in planning the rooms in Kuldre Schoolhouse.

“We have experienced how our participation scares the organizers. As people with disabilities, we have experienced a lot how our participation – in a wheelchair, especially an electric wheelchair – gives the organizers quite a fright. But it shouldn’t be like that. We are actually bothered by feeling treated differently (special treatment) and we are given special attention,” explains Jüri Lehtmets. Unfortunately, the next meeting has been postponed to a later date because of the CoVid-19 situation. Despite this, the Golden Key team, along with Helpific, who connect people in need of care with volunteers who are willing to help through online platforms, are ready to give ideas on how to cater for the needs of people with disabilities. The plan is to seek help from ICTs and create a simple tool, where organizers can create an event on the Helpific platform and add signs for physical accessibility, descriptions, volunteer presence and interpreters, and much more. Through the platform, the people in the area with special needs are notified, and can plan their visit even further by requesting a personal helper or transport via the platform.


The beginning of everything is trust

The digital tool isn’t a magic wand that solves everything. As a result, we have to turn to other methods that support participation, like face to face meetings, public discussion, seminars, round tables, and, of course, Vunki mano!-type meetings, which should take place everywhere.

In some ways they are taking part in shaping society and voicing our thoughts to reach as many people as possible. Tiia Järvpõld has also taken part in the meetings, organized seminars and consulted local municipalities on the topic of personal helpers.“ I often feel that being included is just an illusion. Public servants and institutions think that people with disabilities can give advice, but they are still the ones who need help, not someone who can speak with us or make decisions. Often people cannot get past the thought that a person with a disability needs help and thus iwe can’t see the person with a disability as someone who can give back,” explains Järvpõld. “If a person with a disability has to trust officials, for example, experts in social fields, then why can’t this person trust people with disabilities who knows their own lives better than anyone,” she adds.“ For me, being included foremost means trust. It isn’t about whether I am invited to take part in an event. It is about the extent to which am I being heard. To what extent are people with disabilities actually being listened to?”

Järvpõld thinks that every social worker or expert shaping social policies should have a consultant with special needs, maybe someone on the payroll. “How long can you talk with them voluntarily and run up against the wall with your wheelchair again and again,” she says. Jüri Lehtmets, however, has experienced that the extent to which a person with a disability is listened to depends on physical capability. “The greater the need for help, like for me, the more worthless the person might feel, for example to hospital workers,” he acknowledges. One of the connecting links between local municipalities, who make decisions, and people can be social workers, who are in contact with people with special needs. Social workers understand the essence of different services and the need for them. They can, in theory, have an effect on the decision being made in terms of social policies. For example, to get the necessary funding for certain services.

The extent to which social workers are included in developing and shaping social services is a different topic. To what extent are they allowed to think outside the box? “When we still had a small county, then we were considered more equal, as experts, who were seldom even asked for advice. Even though we argued too, but it is part of the process,” reminisces Tiia Järvpõld.

The unemployment department manager Piret Kahre says that Jüri and Tiia with physical disabilities are talented, great people, but she wouldn’t think twice when thinking about co-operation. According to her, disability plays no role in this.

 Writer: Kristina Amor, Project Manager in Helpific

The article is a translation from an article in Estonian, which was published in the Estonian journal “Puutepunkt” (April 2020). The journal Puutepunkt is an open source monthly published Estonian journal since 2011. The aim and mission of the journal is to bring together disabled people, caregivers, professionals, specialists and policy makers.