ICT changes the world of young with disabilities
Helpific is an online platform that connects people with special needs with volunteers who are ready to help them in their local community. The platform was established in 2014 in Tallinn by young, enthusiastic people from different professional areas to build this trustful relationship between vulnerable people and fellow citizens in the community.
In a traditional welfare model vulnerable people, such as people with disabilities, elderly, people with mental health problems, families with many children, minority groups are served by social and health services. And these services are provided by the state and/or by local governments. Well-established welfare states like Finland and the Netherlands spend 30-33% of their GDP on social expenditures in order to provide proper services.
Estonia follows a different economic model where the state only spends 15-16% of a relevantly lower GDP on social expenditures. We created Helpific as we realized that in this special Estonian model we need to mobilize existing community resources to meet the needs of vulnerable people.
Introducing the fascinating sharing economy model and relying on modern Information and communication technology (ICT) can be a relevant solution to the continuous lack of public resources in the welfare system of Estonia. Sharing economy is a hybrid market model and social phenomenon which refers to peer-to-peer based sharing of access to goods and services using modern information technology.[1] Sharing economy is not only successful in market oriented business models but also represents a new approach in welfare, providing a unique opportunity to empower individuals and communities.
The sharing economy relies on the will of the users to share, but in order to make an exchange, users have to be trustworthy. Sharing economy organizations are committed to building and validating trusted relationships between members of their community.[2]
Young people, the modern new generation of Estonians are very important in this project. We believe, that modern technology, internet, the different gadgets we are using every day, are not only about fancy apps or entertaining computer games. This technology can serve people, strengthen communities, and we can create more connection between each other.
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| Helpific connetcs young people with disabilities with other young people, helps to find friends and live life without boarders |
In Estonia apr. 25% of the population participates in informal voluntary activities, and young people are even more active. 27,5% of 16-24 years old Estonians are involved into voluntary work, while this figure in the age group of 25-29 is already above 31%. (Source: Eurostats)
Helpific tries to reach this generation by bringing modern ICT technology into a traditional field. Usually, voluntary works happen through non-governmental or charity organizations and churches. Helpific creates direct, peer-to-peer connection between people without any necessary affiliation to formal organizations. The platform is an easy to handle website that works on every devices. It can be managed on PCs, laptops, tablets and also on smartphones that are the most popular personal devices of young people nowadays. Knowing that the young generation is already shows growing activity in community and voluntary work we wanted to create a tool that makes helping easier and faster than ever.
Our other aim is to reconstruct the perception of disabilities and the status of people with disability in the society. Young people are again very important in this process. If we can deliver a new, different message about disabilities the new generation will grow up with an attitude where disability is one of the many qualities of a person and not the person itself. We try to get rid of the gray, medical picture of mental health and disability care where people are turned to be a patient or a client, surrounded with the feeling of pity and their entire identity is around their disability and its care. People with disabilities are people like us. We need more encounter with each other in a normal, community setting and disability will be fading away giving space to other, more individual characters of a person. Helpific would like to create encounters like this.
Zsolt Bugarszki, Head of Helpific International
[1] Hamari, Juho; Sjöklint, Mimmi; Ukkonen, Antti (2015). "The Sharing Economy: Why People Participate in Collaborative Consumption". Journal of the Association for Information Science and Technology. doi:10.1002/asi.23552.
[2] Charles, Green (May 2, 2012). "Trusted and Being Trusted in the Sharing Economy". Forbes. Retrieved 13 June 2013.
People with Mental Health Problems on the Labor Market – Danger or Opportunity?
Kristiina Allekõrs (Diagnoses of Larsen disease and Asperger syndrome): The biggest problem for people with mental health disorders is that at first they will not be hired and secondly, they create fear covering themselves in the media - they won’t reveal their name and face and the journalists are reluctant to disclose this information. For example, I had an article in the newspaper “Õhtuleht” recently, where I was called Leida even though I was totally against it. I want mental disorders to be treated the same way as a physical special need, but for this we need to break the barriers and make the journalists see that we have the same right to make decisions as the others – even if it is risky. If someone criticizes us, we need to get over it.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): Kristiina, thank you for your idea. I will continue and ask, how is it then? When you see a person in a wheelchair, the disability is visible to everyone, but mental disorder may not be visible and recognizable from the outside. Do you share Kristiina’s idea? Is there a reason to hide the disorder or not?
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| Discussion. Photo by Andres Teiss, Tallinn Mental Health Center |
Marju Õunpuu (Founding Member of Duo Publications, interpreter): I think it is a question of gut feeling. I, for example, have consciously hidden it from my employer – the disorder does not make any difference when starting work, because it is not the disorder that starts to work, but the person who has the disorder starts to work. Besides, I know this much to say that the health will not deteriorate at once or in an hour, but gradually and insidiously and it will be noticed. If the situation arises, I can prepare the employer for it. Since I work on a contract, I can always say that I have too much work to do and I take on less. I work at home, but even when I have been in a place surrounded by a team, I still have not found a reason to advertise this. It is not a question of prejudice, but also a question of feeling and identity – is this the most important thing in me or is it just some kind of specialty. If I identify myself through the disease, I am only intensifying the bad feeling. Nobody wins anything from this.
Kristiina Allekõrs (Diagnoses of Larsen disease and Asperger syndrome): That’s not completely what I meant and I am not ashamed to say it. My mood could simply change in a second.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): What does the employer think? Ülle, would you want to know about the person’s mental health disorder?
Ülle Matt (Head of Human Resources in Swedbank): While coming here, I was thinking that it depends on how the person himself feels about it. If the person thinks that this could affect his everyday behavior, it would be nice to mention it. I think it is not necessarily essential, if not considered important.
Kristiina Allekõrs (Diagnoses of Larsen disease and Asperger syndrome): For instance, the Unemployment Office revealed both the full name and face of the person. But in case of a person with a mental health disorder, only first name will be disclosed – I consider it as discrimination when one disability is brought out to the open more than the other.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): Thank you, Kristiina. What does the Ministry of Social Affairs think? Work Ability Reform is on its way, how can we support people with different disabilities to get work equally?
Rait Kuuse (Undersecretary of Social Field of the Ministry of Social Affairs): Work Ability Reform is a good example. When I came to the Ministry of Social Affairs, we intensely started to develop this reform further. This is a good example of the fact that talking about something changes the way we feel about it. I think that in the year 2014, different people and different thoughts would have been in this discussion round. Today, the topic of disabilities is not such a taboo as it was a couple of years ago. This is my own little observation. During this we have discovered that there are a number of different employers who have worked for years to keep the people with special needs aboard and in fact they have not disclosed it anywhere. This has come as a surprise to the Ministry of Social Affairs and even as a bigger surprise to everyone else. We already have something to build upon. Now, coming back to the topic whether someone’s name is or is not listed, we should keep it in mind that Estonia is a small country and someone might take it the wrong way in the neighborhood even if something good is being done.
Kristiina Allekõrs (Diagnoses of Larsen disease and Asperger syndrome): One should not be bothered by the opinion of the others. I have never done that.
Rait Kuuse (Undersecretary of Social Field of the Ministry of Social Affairs): Very good, I think that’s the thing here that the Ministry of Social Affairs has fought a couple of fights during the recent year. Yes, there is the Work Ability Reform, but we still have big special welfare institutions that have somehow been kept hidden. We have discussed whether people with mental disorders who need special welfare services, should be hidden in the forest enjoying the nature and birdsong, or should they come out to the towns amongst people. We have had a number of high level discussion partners who said that people with mental disorders want to live in the forest and grow plants. Yes, some people want to stay in the country and we do have places like that, but having this discussion only from that angle sounds a bit ignorant to me, to be honest. Fortunately, Estonia is in a situation where the population is decreasing and every person counts – therefore, people’s special needs and specialties cannot be the basis of exclusion. To continue like this, for example Kristiina needs to talk about her needs.
Kristiina Allekõrs (Diagnoses of Larsen disease and Asperger syndrome): I would also like to talk about the welfare of people with mental disorders. The day centers and institutions for people with milder special needs are not accessible to people with multiple disabilities meaning people in wheelchairs. Even the Mental Health Center is partially not accessible because they have no money to rent better facilities and the State is not helping out – here I am pointing a finger at the Ministry of Social Affairs.
Rait Kuuse (Undersecretary of Social Field of the Ministry of Social Affairs): Yes, that’s right. Half the Ministries are not accessible. An Accessibility Council has been formed in the Ministry of Social Affairs. Recently we went to Jõhvi and did a quick daily analysis on accessibility. As a result a lot of decision-makers have contacted me to talk about different gaps there, because they understood that the situation is not as good as they thought it was. The question here is that we have to notice and talk more and not only among our own circle, but in a way that people with special needs, employers, decision-makers in the Government would all be around the same table trying to find solutions together. But in getting people with mental health disorders to work, I think the biggest obstacle is awareness.
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| Arne Kailas and Rait Kuuse. Photo by Andres Teiss, Tallinn Mental Health Center |
Arne Kailas (Head of Work Ability Policy of the Ministry of Social Affairs): Rait already talked about it, but as discussed earlier, it all starts from yourself and personally – how I feel and behave, how I see things. In the end we all have special needs - some like noise and some not, and to get through this we need to talk about it with everyone involved – employers, disabled people, the Ministry and policy makers all need to think how to set the frames. We have to talk to the institutions that help to carry it out, meaning those who will be helping people in reality – Estonian National Social Insurance Board, Unemployment Office. We all have to do it together to reach the best result. Within the Work Ability Reform we have tried to talk more with all parties to find out what their concerns and problems are and what could be the solution. We are ruling it out that special needs would get a negative answer. The best messenger to an employer is another employer. It is not enough that the Unemployment Office, the Ministry or the so called person from the street talks about it, employers need to talk about their experiences. Like Oliver is a peer support, it is certainly important for a person to hear about other people’s experience and knowledge. How it has been for the others, what has been done, what knowledge can one gain from this and how to use it in the future.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): Kristi, what can the Unemployment Office do?
Kristi Rekand (Case manager of the Unemployment Office): At first I would like to say that an excellent version is legislation that supports the attitude towards people – UN Convention on the Rights of Disabled People that was ratified. According to this, a change of paradigm in people takes place, as we now say that a person who has a special need means mainly a person who has some sort of a special need, be it somatic, mental, doesn’t really matter. I have represented people in court cases and when dealing with the Judge or Ministry official, in the end it all gets back to the level of a single individual and society, are we really ready and how do we see it. An employer is also a person and he could have prejudices and we have to promote this at a society level – there is a person behind the disability. My moving from the second sector to the Unemployment Office was related to the same topic – they were looking for a case manager to deal with people with mental disorders and I intended to help this target group in a completely new field, from another angle, not as a law person, but as a social worker. The Unemployment Office is turning more and more into an institution with a social direction – humane approach is important and whether case management is carrying out its purpose. We have excellent new services concerning health, negotiations with employers, working with a support person, protected work – this role has become very wide. When a person himself wants it, we fill for surely find a solution.
Kristiina Allekõrs (Diagnoses of Larsen disease and Asperger syndrome): When doing protected work, I was being bent very strongly and talked to in an imperative tone.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): Now, stop! We have other speakers also. Please.
Katrin Grünberg (Member of the Board of Duo Publications): All those propagandas and slogans are very nice, but in reality it will lead nowhere if employers who need to offer part-time work do not get advantages, otherwise it is an expense to the employer. People with mental disorders are mainly able to work part-time only.
Arne Kailas (Head of Work Ability Policy of the Ministry of Social Affairs): At a recent meeting with the employers, it turned out that they don’t actually know that even today they could offer part-time work to disabled people.
Katrin Grünberg (Member of the Board of Duo Publications): Filling one job with three people with special needs is not profitable for the employer if he only gets back the social tax – this is not sustainable.
Arne Kailas (Head of Work Ability Policy of the Ministry of Social Affairs): Yes, but at that meeting with the employers they said that it is actually possible.
Marju Õunpuu (Founding Member of Duo Publications, interpreter): I would also say that there is one possibility to solve this problem. Currently the social tax advantage applies when you have a private limited company. If a person is self-employed, he pays social tax and the advantage is not applicable, which is extremely unfair. A person with special needs could become self-employed to get the advantage. I think this should be definitely put into practice. I myself got a fright when I was self-employed for some time and knew that the State was supposed to pay my taxes and in a couple of months I got a huge bill from the Tax Board. When a person is his own master, and the employer does not have to deal with everything, it would also solve the problem
Arne Kailas (Head of Work Ability Policy of the Ministry of Social Affairs): The Ministry of Social Affairs is dealing with it and we are aware of this problem. As some organizations represented here have also suggested that it could be implemented also in the public sector, we will look at it more broadly, what it will entail and what effect it will have. This is of course a longer process but it needs to be looked through. We will deal with this problem in whole and we can’t say at the moment, what kind of solution we will reach.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): I would like to ask the employers whether you know your rights or not?
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| Sabina Trankmann. Photo by Andres Teiss, Tallinn Mental Health Center |
Ülle Matt (Head of Human Resources in Swedbank): This is difficult to say. Even if I know, it doesn’t mean that everybody else knows. In general the awareness is very low and the first thing we should do is to make people aware that it is possible to hire a person with special needs. As a whole people don’t know what the opportunities are for different needs – is it possible to work or not. Automatically they will be labelled as not able to work. I think the first thing we could do in the society is to talk more about what different special needs entail to take away the fear and the label. Advantage only will not motivate, what motivates is that the employer needs workers and there aren’t any. We have to start hiring part-time workers to have enough workers. We will most probably then start looking for them. Not everyone should be told about tax advantages – not everyone wants those advantages. It is not about the advantage, but also about the awareness. At first the Work Ability Reform created anger in the society. I was also angry, but I have calmed down and can now see the effect it has on the society. It is good that people talk about it and this gives a feeling that employers could hire people with special needs, but the employers no nothing about their needs nor their illnesses in general.
Karolin Tooming (Coordinator of Protected Work Service in Tallinn Mental Health Center): Within the Interreg project, we are organizing free training for the employers who would be ready to hire people with mental disorders. The trainings will also take place in the end of August and in the beginning of September and either Keiu or I should be contacted. The training lasts for two days, there are still free places and it is carried out by our psychologist, who will introduce different forms of diseases, what to take into consideration and how to act. Also our peer support will participate. One training has already been held and the feedback is very positive – people are much more open and receptive. Certainly there is this opportunity and everyone can participate.
Kristiina Allekõrs (Diagnoses of Larsen disease and Asperger syndrome): I would like to add that people with mental disorders do not have a kind of half-aggressive spokesperson or leader who would stand up for us with his own name, face and voice. For example, Association of People with a Mobility Disability, Tiina Kangro in her own range and on welfare of relatives. There is no awareness through media about real life examples from people. Ordinary people who read the newspaper every day, don’t even stumble upon these stories because there aren’t any.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): Yes, and this way the awareness of employers would rise like Ülle just talked about.
Karl-Erik Pedemann (Project Manager of Kehrwieder): We are representing here two completely different organizations. One is a big international organization who has the knowhow and experience and space to even create Departments of Human Resources that have the possibility to go to different trainings. But in case of a small enterprise, one person constantly needs to deal with a thousand things. I would like to say to the Ministry of Social Affairs that please, do not invent a bicycle. From where has Kehrwieder taken this topic that we have different people at work. The person was born in Canada and he has brought his missions from there, but unfortunately he did not bring the law that applies there and everywhere else. Think how it is done elsewhere. If you say don’t reveal that there is something wrong with you, then for example in our company the emergency took one visually impaired person to a psycho-neurology hospital. I tried to get support from the organization for visually impaired, but they told me to write an application, that it is not their problem and they don’t care. At the same time they ask us to hire them. In the end we were trying to find a solution and we needed a sign language interpreter – nobody cared. Then we reached the person’s mother and she said that in some situations the person develops a mental disorder, but the employer was not notified about it. If something like that happens in a big corporation, the Department of Human Resources will be called, but I have to deal with a lot of things besides human resources. Our work completely stopped. Our colleagues have no trouble working with different people. I need support from these organizations. What is the point of having those NGOs with a proud name when they don’t care about anything. You are saying that companies are bad, but we also need help.
Kristi Rekand (Case manager of the Unemployment Office): I am thinking now in the context that we have completely left out one topic, the headline was “People with Mental Health Problems on the Labor Market – Danger or Opportunity?”. Here we have the word “danger” – we have completely left this out. This is what I have been fighting against in court cases - that mental disorder means danger. This is what we should deal with and then we will get to the formation of employers’ values and principles throughout the generations. Our society is young and everything takes time, that means we constantly need good articles and cases in every possible media publication the employers receive.
Keiu Roosimägi (Co-founder of Helpific): In connection with our Project, there is a media campaign where one of Helpific’s tasks is to make interviews and articles with young people with mental disorders and employers, but this is like going through a wall. Firstly, the young people have not yet acknowledged that they have a disease or a disorder and very often they are afraid to go public under their own name and face because they do not know how it might affect their future. One employer, a state enterprise, said that they will not give an interview. They should be the spokespersons and leaders in this and give their opinion, but they refused to give an interview.
Kristi Rekand (Case manager of the Unemployment Office): Likewise, I have represented those clients for a long time. Coming out of a closed institution, termination of custody – all those extreme methods. It has always been in the background who is willing to take the risk to go public with the client, because really, our society is not ready for this.
Rait Kuuse (Undersecretary of Social Field of the Ministry of Social Affairs): I would like to interfere for a second. I am hearing about this mystical employer here, but who is this employer – he is a concrete person. In reality, there is the question about awareness and receptivity of different people.
Katrin Grünberg (Member of the Board of Duo Publications): Precisely in the same way there is no mystical group of people with mental disorders. I despise the slogan “there is a person behind the disability”. A person is always the first and then comes the disability. The person is in front of the disability!
Ülle Matt (Head of Human Resources in Swedbank): It is not only about the employer, but also about which environment the person will start to work in and about the people around him. Where do people come from – from our society. If an employer with 2000 people needs to deal with these problems in depth, then creating awareness is difficult and takes time – we can’t break the stereotypes in two days. This is a joint effort that needs to be done in the society and the employer can also participate.
Katrin Grünberg (Member of the Board of Duo Publications): Is the Ministry of Social Affairs willing to hire a person with mental special need with special education?
Rait Kuuse (Undersecretary of Social Field of the Ministry of Social Affairs): I think it would be very difficult. We have hired people with mobility disabilities and we have also had people with mental disorders. We recently had an issue with sending a person with a mobility disability on a business trip and I suggested that we could all go together because he needs this, but that created a discussion in the house, that who knows, he would need a personal helper and this and that and then I had to say that I am not discussing it any further, he is our employee. I don’t care how it is regulated how he can be there. This reflects that the Ministry of Social Affairs is a bit more ready than an average, but we are definitely not completely ready. There is no point to glamorize it that this is how it will be. What is the problem? The ministry of Social Affairs or any government institution is in front of a problem that if we take a look at how many people among the people with special needs would qualify, then people with special needs do not reach this sort of education. There are a number of good examples, but let’s be honest, it is very difficult to acquire higher education and they do not get higher than middle- or secondary school.
Katrin Grünberg (Member of the Board of Duo Publications): Stereotypes! Now we know why people are afraid to come out under their name and image and we do not have an organization representing people with mental disorders.
Rait Kuuse (Undersecretary of Social Field of the Ministry of Social Affairs): But you do have one.
Katrin Grünberg (Member of the Board of Duo Publications): No, we don’t! We don’t even have an organization representing us in the Chamber of Disabled People because this topic is so stigmatic.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): What is Finland’s experience in this?
Terhi Pääskylä-Malmström (Finnish journalist and interpreter): I am not an expert, but if I think about the fact that I am also a small entrepreneur, am I ready to hire someone? My problem is that in Finland there are so many interns, both disabled and not disabled and there needs to be time to supervise them and a support person is needed to always ask help from. I am not ready to hire someone because I just don’t have the time, but if I talk about Finland in general then this is not very much talked about. People rather talk about disabilities like visual or mobility disability, mental disorders are not very much talked about – this is taboo. I know one autist very well who has never mentioned this at work, but he knows 10 different languages in oral and in writing. He is constantly asked how is that possible? He just answers that he has studied a lot in school. He is afraid to say that he is an autist, because he would get labelled and this disorder is not visibly ascertainable also. Maybe it is a little bit more talked about than in Estonia.
Anita Kurvits (Peer support in Foundation TU Mental Clinic): In Estonia for a person with a mental disorder to do professional work, he needs to hide his disorder. I have different project experiences how people have got work. People with mental disorders are hired as trolley locators and cleaners, but professional work is possible to get only when the disorder is kept in secret. My friend called an employer to get work, but once she mentioned her disability, they hung up immediately.
Rait Kuuse (Undersecretary of Social Field of the Ministry of Social Affairs): The changes will not happen overnight. Not very long time ago, people with disabilities were not seen at all on the street. There were war invalids who were missing a leg or two, but in reality the problem has been more diverse. We need to take into account different special needs. Let’s not forget where we come from. When comparing with Finland, yes, we would also like to get that far, but Finland has had their own challenges in the social system and it always seems that life is better somewhere else, but it is our job to make things right here.
Sabina Trankmann (Internal trainer in the Unemployment Office, moderator): With Rait’s positive comment I would like to finish the official part, because now a strange thing will happen and the moderator will leave the discussion and takes one of the participants with her to go to another panel. I am giving everyone an opportunity for further discussion, thank you to Helpific and everyone else.
Laur Raudsoo, Helpific
Translation:
Liina Martinson
More photos from the event:
Discussion in Tallinn, Stroomi beach
© Helpific
Positive Attitude Development
11:01:00 PM
Lost years or a valuable lesson of life?
When life rolls difficult ordeals in front of us, it is important how we are able to deal with them. Especially important here is the ability, because without giving a more philosophical sense to the situation, we firstly tend to place ourselves in the role of a victim, which unfortunately will not help in coping with difficulties.
We meet Madis in the Mental Health Center of Kadriorg and already the first glance at the young man convinces me that this young person with an athletic physique and a friendly, confident look is not representing the role of a victim, but someone, who has clearly thought things through for himself. However, at the same time it can surely be assumed that the path he has taken for nearly 10 years has not been easy for him.
We meet Madis in the Mental Health Center of Kadriorg and already the first glance at the young man convinces me that this young person with an athletic physique and a friendly, confident look is not representing the role of a victim, but someone, who has clearly thought things through for himself. However, at the same time it can surely be assumed that the path he has taken for nearly 10 years has not been easy for him.
At
the age of 18, the doctors diagnosed Madis with schizophrenia, and later with
bipolar personality disorder. It all started from a deep depression during
adolescence, which was so strong that it was starting to take away the will to
live. Coping during the most difficult times of life – teenage years – mainly
depends on how well we are prepared for this and how strong we mentally are.
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| Madis |
The
young man, now aged 28, comes from a small rural area. Although grown up
without a father, he himself considers his childhood as a happy one – well
cared for and loved by the womenfolk, the boy was healthy, strong, and a good
student in school. It all changed in his teenage years: “It was bullying in
school- every remark towards me created stress. I was an athlete and physically
strong, but an introvert in nature and sensitive to bullying, I also had no
abilities to defend myself.” Madis himself believes that the bullying might
have been caused by his special status in school – the headmaster and some of
the teachers were a part of his family.
The
young man changed schools after depression took him to the hospital for the
first time. In a small place, everybody knows everyone and he did not wish to
go back to his old school as an object of discussion. Instead he finished
high-school in the Tallinn Old Town Evening School.
Life
with a severe diagnosis
Schizophrenia
means life in a completely different, unintelligible reality for the others,
and everything you hear, see and experience, seems so real that you will not
even realize that everything taking place is a reality only for you and not for
the others. How could you understand that these obsessions, strange images,
terrifying sensations are only a “wicked fabrication” of your own brain, and
have no greater connection with the world surrounding you. Madis put the pieces
together slowly, piece by piece, but the beginning was complicated.
To
visit a psychiatrist for the first time, was a psychologically difficult ordeal
for the young man, and it took him several years before he felt himself more
comfortable. Now he has his own doctor, but Madis is of the opinion that there
should be a site on internet where youngsters in distress could find some
overall information about mental disorders and their symptoms and even the
contacts of doctors or peer support, whom to ask primary advice.
“Before
my illness, I did not know anything about schizophrenia nor about bipolar
personality disorder. I had only seen movies where schizophrenia was shown in a
very bad light, amplified in a terrifying way, but I had not read anything
about these diseases. When the symptoms appeared, I did not have an idea what
it was – I was young and was not able to cope with the situation. During the
last 4-5 years I have learned more about this illness. I have read books, gained
knowledge from doctors, learned from my own experience, and participated in
trainings”.
While
struggling with psychosis, Madis has been to the hospital several times during
the years. One treatment session endures for about 2 weeks. “In
the first years, I needed to stay in the hospital for 5-6 weeks in a row. Now I
have enough experience and I can arrange my life so that I only get sleeping
difficulties – I can predict and know when the right time to go to the hospital
comes. Previously I was not able to react in the right time and I only turned
to the hospital when the situation was pretty bad. At that time, I also needed
to stay in the hospital for longer.”
Madis
is grateful to his family and friends who have always supported him. Family
members helped him realize that he would not be able to come out of this on his
own and needs to turn to the doctor for help. They also encouraged the young
man to seek help from sports, and fitness centers are a part of his days even
now when he is working as a coach in the Iru Youth Center.
Sick
or just a special person?
In
the first years after my diagnosis, I felt very sick and took the role of a
sick person. But later I started to think of myself as a special person. I
might be sick, but I do the same things that everybody else – I study, work, do
sports. I have friends, a girlfriend, and a family”.
Now
Madis says that the disease is a part of him and he is satisfied with it,
especially as he can do everything the same way his friends do. “I can do
everything they can do. The only difference is that I need to watch my health
more. There are more severe diseases than this. I have even thought that due to
my disease, I am more caring about myself than other people my age – I go to
bed at the right time, I do sports, eat healthy – I try to develop myself in
every way. The disease makes you think. Young people nowadays go out a lot, use
alcohol and do drugs. I know, that if I take good care of myself, my health
will be ok”.
Prevention
and rehabilitation
Madis
agrees that educating young people in the field of mental health should already
start in the first grades. Nowadays depression hits young people at an earlier
age and it is very important that the child would be able to notice the
symptoms in himself before the time when help should be looked for.
The
young man regards peer support practice as extremely important – experience is
the best teacher, even someone else’s experience. “In the earlier years I could
have used more help – it is much easier to cope with the situation when you
know that others have gone through the same thing. Peer support does not
emphasize the disease, you can easily relate to him, he has gone through the
same thing and understands the person in need better. He helps you to understand
yourself and your problems”.
Peer
support is not yet very common in Estonia as a support system, but Madis is
certain of the efficiency and importance of it through his own experience and
he has decided in the future to help people in need. He has gone through the
theory part of peer support training and after practice, he will be ready to
share his experience. I hope Madis will fulfill his dream to become a
psychologist so that he could successfully use his experience to help others.
In
the last two years, Madis has had a support person who helps him to give sense
to life and set goals and to cope with everyday life in general. Since
hospitals don’t offer support services, Madis’ own support person has visited
him in the hospital and he regards this support as very important. “Especially
in the beginning phases of the disease, it is very important to have a support
person, but he is of great help even afterwards”.
The
young man thinks it is important to do explanation work in the society talking
about problems of people with mental disorders, especially regarding their
employment. Employers are often prejudiced and diffident towards them and
mainly because of the society’s stigmatized attitude. “I think that employers
don’t have the experience in working with these people, they are also not fully
aware of the possibilities they could use when hiring people with mental
disorders. I believe it should not always be a problem to make more flexible
working schedules, not to apply night shifts etc”.
Life’s
valuable lesson
It
can firmly be stated that Madis has learned one of life’s lessons. There is no
point in getting angry or in a fight with something that you can’t change in
the first glance – better yet to accept it, learn from it and as a result we
won’t be talking about years lost to the disease but about a valuable
experience which has strengthened both the soul and mind.
“You
can’t give up, growing makes you stronger. And you can never know why something
might be good for you,” adds Madis in conclusion.
Text:
Ene Kaju, Helpific’s volunteer journalist
Translation:
Liina Martinson
© Helpific
