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International and national Literary/Art »Contest« for patients suffering with atopic dermatitis

Literary/Art »Contest«project would result in anti-bullying book of contributions and anti-bullying art video.

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Please elaborate on your proposed solution to the challenge in no more than 300 words.

It is nearly impossible to articulate what pain feels like.How does an itch to the bone feel?Moderate to severe patients with AD feel unbearable itchiness,physical,and emotional pain.Physical pain is manageable,but itchiness and emotional pain due to isolation,stigmatization,and discrimination are not.How does it feel to be rejected?How do you feel when the parents of healthy children do not allow you to play with their children,eat with them,or touch them?How do you feel about continuous name-calling and the bullies acting on their anger in a physical way?How do you express your feeling when the doctor tells the teenage you that this is a disease only unwanted children have?The pain,however,makes us unique.We can often achieve a higher level of creativity than we would under»normal«circumstances.So,in a way,we can say that pain makes us more creative and able to express the unimaginable pain we go through.Furthermore,scientists say that art has a healing power–they discovered that it boosts the immune system by lowering the levels of inflammatory chemicals.Art enhances brain function,relieves stress,and connects the brain to the body.In this way,the project kills two birds with 1 stone.A picture paints a thousand words,but a video shows a thousand pictures.We would do an anti-bullying art video.Written stories,poems,other artwork and our video would touch the hearts of teachers who should protect the victims and educate the bullies,who are usually broken children themselves.

What is the name of your organization?

Atopika, non-government and non-profit organization for patients with atopic dermatitis.

Where are you and your organization based?

Maribor, Slovenija

Please provide a description of your organization.

Atopika is a NGO and non-profit org.dedicated to patients with AD and their family members.Our org.has an educational,advisory,supportive and advocating role.Through educating and socializing our mission is to make a contribution to a higher quality of life of individuals with AD and their caregivers.We are working hard to change the policy,ensure that patient get quality care and access to medical treatment.We want to raise the awareness,take away the stigma and to put an end to discrimination.

What is your name?

Tina Mesarič

Tell us about your organization, or the organization you are partnering with: What inspired you to participate in this Challenge (300 words or less)?

Atopika is a NGO and a non-profit organization dedicated to AD patients and their family members, that I established a little more over 3 years ago–precisely when my son was born and started to show the first signs of AD. I am a patient with severe AD and was bullied from kindergarten on.Children can be ruthless,even cruel in their honesty and ignorance of the consequences.Harsh words,insults,laughter directed at my appearance were a part of my everyday life.I remember the playgrounds and the parks,and parents pulling their children away from me when they saw my skin.“Go away!” and “This is contagious.” they said.Once,when I was a teenager and was admitted to the hospital, I was laughed at by a medical doctor. And in the middle of his laughter he said: “Well! Who dragged you over the pavement?”And imagine a teenage girl who just wants to be beautiful, apply some make up and flirt with a boy. Is that even possible? Everybody telling you how ugly you are? And who would blame them? You cannot bare the sight of yourself–by covering every mirror in the apartment or anything that has a reflection.Who would love you,when from an early age on,all you can remember is being disgusting.Today stories from parents of children with AD are similar.Nothing has changed in the last 30 years.AD receives no attention,because it is“only a skin condition with no stigma attached to it”.And now the bullying does not stop in the safety of our home,but continues as “online bullying”.I am inspired, because I want to contribute to a kinder and more empathic world for my son and and other AD patients.

Building on your initial proposal in the Ideas Phase, please share additional information on your solution to the challenge in more detail (500 words or less).

Child, teenager and adult bullies are usually children from broken homes, neglected, bullied, or children just acting out on cues from their parents or role models. I strongly believe in education, support, storytelling, empathy and love, therefore the project should include both sides. 1. Contest: My skin – my pain (national) will have 4 categories: “Children with AD”, “Teenagers with AD”, “Adults with AD” and “I bullied an AD patient”. Everyone can apply one work of art – what kind is freely decided by the participant (painting, drawing, poem, life story…). Every voice counts. In every category there would be 3 prizes chosen by a committee composed of doctors (dermatologist, allergist, GPs, psychiatrist/psychologist), a teacher and an artist. The prizes would be a small financial contribution and some additional symbolic prizes. 2. Contest: My skin – my pain (international). We would contact organizations dedicated to AD patients worldwide and invite them to participate. Same categories as above would be presented. Every country would pick “the best” arts contributions in each category. An international committee would choose “the best” contributions from all around the world and award them with a small financial amount. 3. We would do an AD awareness art video. The length of the video would be 1-3 minutes long and would be recorded in both Slovenian and English language (or at least subtitled) so everybody could use it for educational purposes. 4. We would do a printed book of chosen contributions in Slovenian language and an online book in English language. Books can be distributed to patients and caregivers that feel alone, to the medical community, teachers at schools and kindergartens – the books would educate them that AD itself is hard enough to live with and bullying must be prevented. Every participating country can do the same with the contribution they get locally. 5. We would do a project for bullied patients and parents of bullied children in kindergarten and in schools and offered the kindergarten/school an educational leaflet, telephone number to call when the child is under stress and workshop if needed. 6. Participants of the contest will use art to relieve stress, express their pain, and as science shows, this can even lower the levels of inflammatory cytokines. People being bullied have a low self-esteem, and therefore usually cannot publicly express the things they are being bullied and shamed about. They lose their voice. This project will give them opportunity to be heard because it will offer anonymity. A psychiatrist that is also AD patient read and viewed some of the contributions we currently have and said: “Amazing but sad. All the contributions reflect the pain of otherness, loneliness, suffering in the world of scratching, insomnia, new impetus for skin inflammation-but also the inevitable struggle for life,love,search,and show the mental strength in the perseverance of each of us who know the condition.

Please share more information on the steps you’ll take to make sure the project is a success (500 words or less).

1) On the local level - We will promote art/literary competition in hospitals, schools, universities and kindergartens around Slovenia. 2) As a part of the national contest we will include a committee of doctors and teachers that AD patients come in contact with regularly. Members of the committee will write a short contribution for the book and hopefully it will be an inspiration for doctors, teachers and others to open the book and see behind the skin, see a person behind the disease. A committee will choose top three contributions in each category that will be awarded with a small financial contribution and other symbolic awards that we will try to provide. If possible we will try to provide a symbolic prize for every participant. 3) As a part of international contest we will try to promote the project to organizations dedicated to AD patients – invite them to collect the contributions in their country and perhaps organize their national committee – to make their national printed or online book (if wanted). The chosen contributions will be in English language (originally or translated). If there will not be a national selection of contributions, contributions will be included in the selection of the international committee. From the contributions we will do an international on line book. The international committee will choose the best contributions in each category that will be awarded. 4) The video will be a short introduction to living with AD and the bullying happening to patients. The message of the video will be: Do not stare. Do not abuse. Look deeper. Look behind the skin. See me. 5) We will try to run the video not only on social media and in schools but also on television. Even with the popularity of social media, a lot of people are not using them and it is important that the massage reaches everyone. 6) We will do an online booklet with all information on how to spot bullying, how to react and where to find help. We will have a telephone number for patients and their caregivers that are victims of bullying. We will have an on-line webinar and/or lecture with a psychologist that worked with children who were bullied because of AD. 7) The bullied patients with AD will not feel alone. We will have a video, national book and international online book. The patients that feel misunderstood can take the book to his or hers doctor. A hopeless mother of bullies and bullied children with AD will have a number to call and workshop will be organized if needed. Timeline is attached.

How is your idea scalable (300 words or less)?

The project in our community will have an important impact since the awareness of AD and attitude toward its sufferers has not changed in the last 30 years. People still do not know what AD is. Is it contagious? Can you catch it? Even with explanation, the fear stays. Due to your look you are an easy target for bullies from an early age on. AD in medical community is still considered as a skin disease, which if correctly treated with local medication will go away. If it does not, you did something wrong and did not follow the instructions. Your suffering is your own fault. Education through art and storytelling can change that. The literary/art competition will give voice to the unheard on local and global level. We will help raise awareness that AD patients do not need to suffer in silence and isolation - thinking it is the safest way to go. It is safe to tell your story and even though it feels like you are alone, you are not. There is a strong community of other sufferers who offer support and understanding. We will help to change the mentality of medical, educational and general community that this is a simple skin rash and that self-perception and stigmatization do not play a key role in AD. With the video we will touch the hearts of everybody who has a spare minute locally and globally. The book of contributions will be sent to anyone who needs to see behind the skin. We will organize a phone line, where bullied children and their parents can call anytime. Lectures will be organized. The same idea can be implemented anywhere in the world.

How would you know if your idea worked and how would you measure it (500 words or less)?

If you ask if I anticipate any barriers, I have to say: “Of course!” Actually everything correlated with AD is a barrier we need to overpass, so I would be surprised if there were no barriers. But a barrier to success? If we touch one bullied child, one child who bullies and wants to change, one parent of a child with AD helplessly searching for help and support – for me that is a success (it sounds a like cliché – but it is true). The enemy of the project is apathy – which is quite widely spread. So it can be hard to mobilize patients. We will try to the best of our ability to send the message of how important is to raise our voices – because only together we can make a difference. And further more – even though the project is called “The competition”, it is far from it. How can one judge the expression of the suffering from one patient to another? How can one decide, “you” showed your AD suffering/bullying better than “he” did. This is an educational project and it must be seen like this. No one is better that the other. Anyone contributing is a winner - because their contribution will help to build a better and more emphatic society. The committee will have a difficult task choosing from very different art contributions and the decision will be made purely according to their feeling – what touched them more and less. If my idea would work, we would »measure it«: 1) By the number of national and international contributions. How many countries and organizations would like to participate. 2) How many doctors/teachers would like to be included in the committee, be prepared to write a contribution for the book and be a part of the new beginning for AD patients. 3) The feedback the society would give us on the video and books – will they see the real pain and suffering the patient or the patient’s caregivers go through and would they be taken more seriously? By the number of video views and book downloads. 4) We would see how many telephone calls we will have and how many interventions in schools and kindergartens will be reported. 5) In the contest we included the bullies or the ones who were bullies. Hopefully they will also respond – since a lot of them feel a sincere remorse and perhaps their story would explain why they did it, how did it make them feel and what did they needed but did not get – in this way the bullies will get an opportunity to contribute against the bullying. The AD patients would have some additional comfort »it is not my fault« and it is not about “my looks and my disease” … it is always about the pain in the bully or a lack of education and empathy.

During the Ideas Phase, you estimated how much your project will cost. Please update if this estimate has changed?

  • $10,000 or more

Please share more information on how the grant funding will be used to bring your idea to life. Please provide an itemized budget. (500 words or less)

AD awareness video: 3600 dollars. National contest: 2550 dollars. International contest: 3650 dollars. National book: 1700 dollars. International book: 1000 dollars. Detailed budget is attached.

If available, share prototypes, images, sketches of how you created your idea, including a timeline of how your idea will roll out (optional).

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Dear Monika.

My deepest apologies also to you. Unfortunately, sometimes it is really hard to stay on track. Waw, you are doing an amazing and important work! I would love to talk more about it. Regarding the project that I wrote - currently we have a national small contest and the picture I posted it is from a girl with severe AD. As I explained to Mr. Ryan, with the picture she also explained why she used the black and white (she wants to be invisible), newspaper (uncounted word regarding her looks she was said to), why the red hat (blood, pain, itch), why the blue eyes (hope - perhaps she would someday be without suffering) ... she explained that she only feels free when she paints. And this is how I felt when I draw, for some reason (maybe I can tell you in person) I stopped completely. But I know how important it is, how it makes you feel a live and how comforting it feels. From every artwork we get we would do an art book. But this would be an open idea - no limitation :).
Regarding the video, it would be an art video - an artist would try to show the severity of bulling and the effect it has. It would not be longer that 1-2 minute, because science show that this is the amount of minutes our brain stay focus. This video would be national and international – it would go viral. Hopefully I answered your question. But I would love to stay in contact and perhaps we can do something together. Kind regard, Tina

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