BRIDGES

The EDbU Newsletter for everyone. Number 1 (December 2006)

My motto: I would like to overcome the gap separating the world of the deafblind and the world which is not disabled.

Hi Europe!

Editorial

Hello everybody!

My name is Marta Zemanová and I´m from the Czech Republic. I´m deafblind myself (hearing of hard and purblind of a severe degree). Now I work as a special educator practitioner for LORM the Society for the deafblind in this country.

From 18.-23rd October 2004 the 5th EBU Deafblind Conference was held in Fredericia (Denmark). There the European Deafblind Union – EDbU – was founded. Its website is at http://www.edbu.org

Last year I became editor of the EDbU newsletter at the meeting of the EDbU Executive Committee Members in Split (Croatia). My proposal for the EDBU Newsletter is here:

The EDbU newsletter is for deafblind people who want to get news from the deafblind field within Europe. The EDbU newsletter is also for their families, friends, and professionals from different fields who want to understand deafblind people.

The EDbU newsletter is for people who want to break through the ice between the two different worlds and to find a way to our mutual understanding.

I´ll need your help. I´ll need your contributions. I´ll be very pleased, when you write to me!

I thank you in advance for your willingness to help!

Greetings and best wishes from the Czech Republic!

Let me introduce the Distribution List of the EDbU Executive Committee:

President

Ove Bejsnap, Denmark:

ob@tegnsprogshuset.dk

Vice-President

Sergey Sirotkin, Russia:

sukhov@vos.org.ru;
oms@vos.org.ru

Secretary General

Jan Jakea, Czech Republic:

jajakes@volny.cz

Treasurer

Mona-Britt Broberg, Sweden:

mona@fsdb.org;
monabritt@swipnet.se

Member of the EDbU Executive Committee

Julia Roessler, Switzerland:

jroessler@vtx.ch;
julia.roessler@bluewin.ch
Jan Jakes, Czech Republic:

jajakes@volny.cz

Editor of the EDbU Newsletter

Marta Zemanová, Czech Republic:

marta_zemanova@centrum.cz

Auditors

Geir Jensen, Norway:

fndbadm@online.no
Dimitar Parapanov, Bulgaria:

nadbbg@mbox.contact.bg

Member of the EDbU Election Committee

Sanja Tarczay, Croatia:

sanja@dodir.hr;
Daniel Alvarez Reyes, Spain:

asesorci@once.es
Lex Grandia, Denmark:

lex.grandia@mail.dk
edbu2007@dodir.hr

Social Situation and Policy

Guidelines for deafblind people, families and professionals in Europe on using the European Unions Written Declaration 1/2004

The Written Declaration 1/2004 is an important step towards recognising the rights of deafblind people and increasing their specialist services across Europe. What is the Written Declaration 1/2004 and what can we do to build on it?

Sense UK provides this useful explanation, which is also available on their website.http://www.sense.org.uk/campaignnews/campaigns/europe/eudeclaration.htm

Introduction
What does this declaration mean?
Campaigning at European and UN levels
What you can do
Examples of countries where recognition of deafblindness has been achieved
- Romania
- United Kingdom
Appendix 1 Written Declaration 1/2004

Introduction

These guidelines have been written to follow up on the success of Written Declaration 1/2004 (Appendix 1). EDbN (the European Deafblind Network) members worked together very effectively to achieve the adoption of the Written Declaration, now we need to make sure we really capitalise on this success.

The situation for deafblind people in individual countries varies enormously and the changes that need to take place vary so the information given is quite general and does not include too many details. If you have any questions or need any advice please do contact Lucy Drescher from Sense UK at lucy.drescher@sense.org.uk.

What does this declaration mean?

The Written Declaration means that the European Parliament has officially recognised that deafblindness is a separate disability and that deafblind people have the same rights as any other European citizens. This includes the right to the one to one support that deafblind people need to access information and many everyday activities.

The Written Declaration is not a law; it does not force national governments to do anything. When the European Parliament and the European Commission produce a directive they can make national governments take action as a result. However, a Written Declaration does not have this power, so they will not be forcing national governments to follow up on the declaration. It is up to individual deafblind people, families and professionals to follow up on the declaration and make sure that their governments know that deafblindness has been recognised at a European level and that they have a responsibility to recognise deafblindness at a national level and provide appropriate services.

Campaigning at the European Level

EDbN will be continuing to lobby at the European level, to make sure that the needs of deafblind people are addressed. This will be aimed at the relevant units in the European Commission; MEPs in the European Parliament; the European Disability Forum (EDF) and other European level campaigning/lobbying groups. It is important that the voice of deafblind people is included in European policy making. EDbN will be working to make sure this happens.

Campaigning at the United Nations Level

Lex Grandia is taking part in the negotiations on the drafting of the potential UN Convention on the rights of disabled people. This means that

What can you do?

Assess the situation in your country

Is deafblindness recognised by the government in your country?
Do you feel there is an understanding of what deafblindness is and what it means to peoples’ lives?
Are deafblind people being correctly identified?
Are deafblind people entitled to services that are specific to their communication and mobility needs?
Are deafblind people receiving the specialist services they need?
Do deafblind people have the right to receive the support they need to work and take part in training at work?
Do deafblind children and young people have the right to receive an education?

What do you want to achieve?

If you feel that the answer is no to one or more of these questions then you could use the declaration to support your campaign to improve the situation.

You need to be very clear about what you want to achieve at the national or regional level. Are you concerned about general recognition, or specific changes in education, employment, social care or provision of one to one support?

Once you know what you want to achieve you can work out how this can be done.

Who should you approach?

You need to find out who can make the change in your country.

Should you be talking to national government or regional government?

Which department is responsible?

How should you lobby them?

Once you have correctly identified the department/person you need to work out the best way to lobby them.

You could produce a report explaining what needs to happen and why.

(If you already have contacts in the right government department you could send the report to them and request a meeting. If you do not have contacts you will need to send them the report and introduce yourself. Request a meeting.)

Keep up to date with the work of the department you are interested in. There may be existing initiatives taking place that you could input into, to make sure that the needs of deafblind people are included.

Once you have clearly explained what needs to change in your country, you can show them a copy of the Written Declaration. You can say that the European Parliament has recognised that deafblindness is a distinct disability and that deafblind people should have the same rights as other people.

Tell us about what happens

EDbN need to be able to build up a picture of what is happening in countries around the European Union following the declaration, so please could you send information to Lucy.Drescher@sense.org.uk. We really want to hear about the experiences people are having across Europe, both good and bad, including any problems you are having.

Examples of countries where recognition of deafblindness has been achieved

Romania

In 1999 the Director of Sense International (Romania), Cristiana Salomie launched a relationship with the Ministry of Education by signing a five year Partnership Agreement with the Head of Special Education. The relationship played to the mutual strengths of the Ministry, as the employer of teachers, and SI(R), as an agency able to access networks of expertise and education practice from overseas, particularly the European Union, as Romanian policy is geared towards membership. The partnership resulted in deafblind children accessing state education for the first time in Romania’s history; the recognition of deafblindness as a distinct disability within Ministry of Education; and the development of an accredited training course for teachers working with deafblind children.

In 2000, a coalition was set up and given the job of improving the existing disability legislation. Cristiana’s work with the Ministry of Education led to her being invited to be part of this coalition. During the Coalition meetings Cristiana had the chance to explain to people what deafblindness is and to emphasise the very special needs of deafblind people. The proposal was presented to the Parliament and some of the things included in the draft were accepted by the Government and included in the new law (519/12 April 2002).

“Dealing with special protection and employment of persons with handicap” (this is a quote from the law) in which there are three references to deafblind people.

(1) ‘Deafblindness is regarded as a separate and distinct disability that requires special methods and techniques for coping with functions of everyday life’. Deafblindness has been placed within the range of sensory impairment but it has been recognised as a unique disability.

Article 15 of the Law 519/2003

(1) “Beginning with the date when this law is enforced, signing language and the specific languages of deafblind people shall be officially recognised.”

(2) “The public institutions shall provide, whenever necessary, authorised interpreters of signing language or the specific languages of the deafblind people, in order to facilitate direct relationships of the hearing impaired and with the deafblind persons. The procedures and the terms of the authorisation are to be established in a mutual agreement between the Ministry of Education and Research and the Ministry of Health and Family, with the technical support of the Deaf and Blind Associations.”

The achievement cannot be overstated. In 1999 there was no word for deafblindness in Romanian. Just four years later deafblindness is taking a central place in legislative change.

UK – England and Wales

A few years ago Sense and Deafblind UK worked jointly on a campaign called ‘Yes to Access’. This campaign was based on a survey of Sense and Deafblind UK members. Members were asked what one to one support they needed and what one to one support they actually received. The results showed how little support deafblind people were actually receiving in comparison to what they needed.

A lobby of parliament was organised, with the help of a member of the House of Lords, Lord Ashley. Deafblind children and adults, their families and professionals went to see their Members of Parliament, to tell them about their needs. Lord Ashley then introduced a Deafblind Persons bill in the House of Lords. The bill was supported in the House of Lords, but the government would not allow it to pass as it was.

Following negotiations, the government offered to produce statutory guidance for local authorities on the services they should be providing for deafblind people. The guidance would to be attached to an existing law, meaning that local authorities had to comply. Lord Ashley accepted the government’s suggestion and Sense and Deafblind UK were involved in drafting the guidance with senior civil servants. The guidance, which came into force in April 2001 includes a definition of deafblindness and emphasises the need for specialist assessment, one to one and support and services, not just services for deafness or blindness.

This guidance applies to England and Wales. Campaigners in Scotland and Northern Ireland are now trying to get the guidance or something similar introduced there using the Written Declaration.

News from EDbU

The 10th european deafblind holiday in Norway 2007

The 10th European Deafblind holiday will be held in Sgne, Norway, from Monday the 6th to Sunday the 12th of August 2007.

Sgne is situated 15 km west Kristiansand S. in the southern part of Norway.

Welcome!

We prepare a range of social, cultural, sporting and recreational activities. There will be walking, swimming, fishing and other sporting trips – not too strenuous! There will also be music and dance events, visits to local places of interest, shopping trips and other excursions.

An opportunity will be given for participants to exchange their knowledge and opinions in all areas in a friendly atmosphere. Apart from these activities, it will be fun just to socialise with other deafblind people exchanging views and information. Or you could just relax and do whatever you want to in this lovely part of Norway.

Oficial language

The official language of the holiday event will be English. But if you don’t understand this language you should not stay at home! There will be a range of communication methods so that all of us will be able to communicate with everyone else.

Accommodation

Accommodation will be mainly in double rooms and sanitary facilities are good. During the Holiday we will organise a bar at the Conference Centre, and there will be plenty of good Norwegian food and drink.

Locality

Sgne is located at the south coast of Norway, about 16 km from Kristiansand. This is a very beautiful part of Norway, lying close to the sea with great opportunities to go swimming and fishing.

Transport

The locality is well accessible by air, railway, ferry and bus. The nearest airport is Kristiansand Airport, 30 km from Sgne. The nearest main railway and bus station is Kristiansand. There are ferries from Sweden, Denmark and Great Britain to Kristiansand. Transport to and from the airport, ferries, bus and railway station will be provided.

If you have access to the Internet you can find more details about:

Flights to Kristiansand Airport: www.avinor.no/Norsk/Lufthavner/Kristiansand_lufthavn,_Kjevik/
Ferries to Kristiansand: www.colorline.no and www.masterferries.com

Insurance

Participants must make their own insurance arrangements for the journey and for the stay in Norway.

Participation fee

The participation fee amounts to 350 Euros per person. It includes accommodation, full board and activities.

The participation fee is depending on what we receive from financial support. We are applying for financial support from the Government and from other donors. If we dont receive enough financial support we might have to cancel the European Deafblind Holiday 2007, but we are doing our utmost not to let that happen. Well make this decision in February, before we send to you the 2nd announcement.

Participants froma East and South Europe

Deafblind people from East and South Europe can apply for financial support to participate at the European Deafblind Holiday. The application can be sent by mail to peter.vanhoutte@versateladsl.be. The maximum amount of money individual participations can apply for is 200 Euro. The money will be given in cash to the approved applicants during the Holiday.

Registration

If you are interested in taking part in the Holiday for deafblind people in Norway, please fill in the enclosed Registration Form and return it directly or through your organization to us! The deadline is 30th April 2007.

Payment

Your registration is valid when the participation fee is fully paid. Final date for payment is 30th April 2007. Using Euros should pay the fee. Payment is accepted via the bank transfer only. Payer has to bear any costs of bank transfers. Cheques will NOT be accepted.

Methods of payment

Please make payment by bank transfer to the following account:

Account Holder: Foreningen Norges dvblinde

Address of Account Holder: Postboks 5922 Majorstua, 0308 Oslo
Name of Bank: Sparebanken st.

Address of Bank: Postboks 54, 3001 Drammen, Norway
IBAN: NO 25 2310 07 15945
SWIFT: DNBANOKK

The payment must be “free of any charges for the payee”, i.e. all bank charges have to be borne by the sender. Please quote the IBAN number and SWIFT Address in your instructions for Bank Transfer. Make sure to give the mention ‘Holiday’ and participant name(s) in the bank transfer details.

Confirmation

A written confirmation of your registration will be sent to you after we have received your payment in full. A detailed holiday programme will be sent to you later on.

Contact details to Sgne Conference Centre:

Address: Sgne Conference Center, 4640 Sgne

Telephone: + 47 38 16 66 66

Telefax: +47 38 16 61 44

E-mail: kurssenter@agder.fhs.no

www.agder.fhs.no/ (in Norwegian and English)
www.agder.fhs.no/kurssenter (in Norwegian only)

Further information about the location

If you have access to the Internet you can find further information on:

www.sogne.kommune.no (in Norwegian only)
www.sogneguiden.no (in Norwegian, English, French and German)
www.sorlandet.com (in Norwegian, English and German)
www.kristiansand.kommune.no (in Norwegian and English)

If you know any deafblind people who might be interested in this holiday, please forward this message to them or send us their address.

If you want some more information or if you have any questions, please don’t hesitate to contact FNDB by e-mailfndbadm@online.no or by post to our address quoted below.

We are looking forward to greet you in Norway.

Yours sincerely,

The Norwegian Association of the Deafblind
Geir Jensen

President

The Norwegian Association of the Deafblind (FNDB)
Postboks 5922 Majorstua, 0308 Oslo, Norway
E-mail: fndbadm@online.no

Telephone: + 47 22 93 33 50

Establishment of Deafblind Association of Slovenia “DLAN”

At the General Assembly of the Association on 22 December 2005, the Deafblind Association of Slovenia “DLAN”, meeting in Ljubljana, passed a resolution on the Associations foundation and its statute. Since 10 February 2006 DLAN has officially been enlisted into the register of Associations of Slovenia.

The Association DLAN is voluntary, nonprofitable, non-political, independent Consolidation of individuals who are connected by their common interests – of deafblind people and their legal representatives, and other people that in any way support the Associations activity, with the purpose of determining, defending and satisfying the special needs of deafblind people and others who have sensory impairments. The president of the Deafblind Association of Slovenia, DLAN, is a deafblind person.

DLAN was the first one to start working with deafblind persons. It operates separately from the Slovene Union of Associations for deaf people and those with hearing impairments.

The Association DLAN is an open association which cooperates with various organizations from Slovenia and wishes to cooperate with other countries and international associations.

President:
Alfred Josip Pevcin

Address:

DLAN

Savska cesta 15

1000 Ljubljana

Slovenia

Contact of the Association DLAN:
Telefax: (00386)59012904
E-mail: drustvo.gss@gmail.com

Tax N: 97676853

Registration N:2045133

Transaction account N:

Establishment of the International Deafblind Sports and Culture Organization (IDBSC)

During the 8th European holiday week in Varna, Bulgaria (2-10.7.2005) a contact group (interim committee) was established. The purpose of this contact group is to work for international sports and culture activities for deafblind people as a continuation of the national sports and culture activity in Bulgaria.

The contact group consists of the following members:

Dimitar Parapanov, Bulgaria – (coordinator)
Geir Jensen, Norway
Jan Jakes, Czech Republic
Peter Van Houtte, Belgium
Nadejda Golovan, Russia

Among other things, the contact group will discuss how to organize international sports and culture activities, work out a draft constitution, a programme and a budget for such an organization.

At the meeting of the EDbU Executive Committee Members in Split, Croatia (November 2005) the contact group discussed the plan of strategy regarding establishing an IDBSC.

Resolutions from the meeting in Croatia:

IDBSC should be an independent organisation in the future.
The first event should be arranged in Bulgaria in 2007 or 2008.
The next meeting in the contact group should be arranged during the European Holiday in the Czech Republic in August 2006.
The name of the IDBSC’s events should be Festival.

Croatian Association of Deafblind People “DODIR”

Sanja Tarszay (Croatia)

The Croatian Association of Deafblind Persons, DODIR, was founded in November 1994 in Zagreb, the capital of Croatia. During the last 12 years Dodir has succeded in improving the life of deafblind people in Croatia. We are the only association in Croatia which recognizes the problems and needs of persons with deafblindness and offers them help in everyday communication and mobility through a one-on-one Support Service.

Our deafblind members are involved in various workshops (art, ceramics, tailoring, acting..). By participating in these creative workshops, many deafblind people discover and develop their talents and art expression.

Our work is supported by volunteers, staff members and lots of people who recognize the needs of deafblind people and who are helping us to accomplish our goals and to make our dreams come true.

We are exceptionally proud of all the awards we have received as a result of our work. The organisation Handicap International has proclaimed DODIR the best Association in this part of Europe which obliges us to work even harder and better in the future.

The Government of Croatia has also recognized our effort and donated a piece of land for the construction of Center DODIR for the education, rehabilitation and work occupation for children, youth and adults with deafblindness.

Deafblind members themselves initiated the idea of creating the Center which will be their voice in the world of sounds and colours.

The construction of the Center DODIR is intended for deafblind children, youth and adults, but also for all hearing people who want to get to know the world of deafblindness.

Center DODIR should be a place of equality where deafblind and hearing people could work together. With this kind of reverse integration, the local community will be included in the world of deafblindness. This will contribute to better understanding of the world of silence and darkness, and also it can help to fight away prejudices and communication barriers betwen hearing and deafblind people.

Furthermore, the Center will provide rehabilitational-educational and profesional-scientific programs. Center DODIR will be an example of good practice in providing a one-on-one Support Service for deafblind persons and people with other difficulties. Our Center will be a unique daily center not just in Croatia, but also in this part of Europe.

A special place in the Center will be a coffee bar with deaf waiters where you will be able to order drinks only in sign language.

A lot of work is ahead of us. We have to organize numerous activities in order to raise enough money to realise our goal. But, like always, we think positively and we believe that, with hard work and with the help and support of good people, we will succesfully accomplish our goal.

Interview

Interview with Lex Grandia

Lex Grandia has worked as the President of the World Federation of the DeafBlind since 2005. He is deafblind because, after he was born two months prematurely, he received too much oxygen while in intensive care. Lex is blind and hard of hearing. For the last two years he has been very much involved in the process of writing the United Nations International Convention on the Rights of People with Disabilities. The Convention aims to protect and promote the basic human rights of people who are disabled, including the right to a decent education, the right to vote and the right to participate in the life of the community.

The full text of the Convention can be found on the following website:
http://www.un.org/esa/socdev/enable/rights/ahc8docs/ahc8draftconv.doc

Marta: Maybe you are wondering why I chose you for the first publication of the EDbU Newsletter. Last year I read your very interesting article “The Sexual development of young deafblind people” in the Forum section at http://www.wfdb.org/. I must admit, that I was fascinated by it. I think that we have similar stories and experiences. Three years ago I wrote my thesis centred on a theme called: “The socialisation of deafblind people”. Among other things, I asked my deafblind respondents about sexual and interpersonal matters. I expected them to be reserved and uncertain about how to reply. But I was mistaken. Our deafblind clients were willing and helpful. They were excellent! I know very well that this issue is very sensitive for many disabled people. Many people have a feeling that it is a “private thing”. When I was writing the thesis I had a feeling that most of my deafblind respondents wanted to talk about their sexual and interpersonal dilemmas. And I still think that many people would like to talk about it, but they haven´t the confidence to do it. They are afraid of prejudice. But I´m sure that it is very necessary to speak about it.

What do you think about this?

Lex: Yes, it is a private thing, but I hope, that what I am going to say, others will recognise too.

I think it is necessary to speak about every feeling and emotion you have in a relationship. Most of us have not learned another way of expressing it than talking. It took me years and years to learn to talk about my emotions. I am still learning, it is not good enough. In the article you mention, I describe how I developed my sexual feelings living in an institution. Most of my first experiences in that field were by being sexually abused. Sex was something others did to me. There was no relationship to love or friendship. There was no love or friendship at all. We were in fact not allowed to touch each other.

Marta: Lex, were´t you afraid of other people´s prejudice and misunderstanding when you wrote about your own “sexual” story?

Lex: Well, let me first talk about misunderstandings. There is a big difference between the sighted and hearing world and the mainly tactile world I am living in. A lot of interactions between sighted people take place by looking at each other´s body language and facial expressions. They dont need to find words for it, it goes without saying. I have, because I am born blind, no facial expressions. I need to talk. It is difficult to find words for feelings. The words we have are most of the time not good enough. I can feel lonely, but that does not necessarily mean that I feel sad. I cannot say, “I feel only”. I wish I could develop a kind of tactile body language to express emotions better. Of course, I would have to explain to my wife or others again what it would mean. Sight is so dominant in our society that we hardly get the possibility of developing something.

Another thing is that I want to have a kind of tactile contact with my partner and in fact also with other people. When they only talk to me, they are quite far away. My dreams and fantasies are tactile. I discover the world, the things and the people around me, mainly in a tactile way. A good example is: a strange and new toilet in an airplane. My partner can tell me where everything is or point my finger to touch it, but I need both of my hands to locate the toilet, flush, water, paper, and soap. I am lucky to have a wife who has been working with deafblind children for 25 years. When my wife wants to find her car key, she is looking everywhere. I am thinking and reconstructing and sometimes even able to locate it. These are differences in doing things.

The prejudices come when I talk about touching people. I have on several occasions explained how important a hug is for me. Sighted people who gave a reaction honestly, thought that I was looking for sex with everybody. It is difficult to explain that most of the time that is not the case. There are many ways of giving a hug or touching each other, without directly going into sexual interactions. We all have to learn that. I have not met the prejudice that deafblind people should not have sexual relationships; only when they were living in institutions, but not outside.

Marta: I understand that your wife is not disabled. Could I ask about your relationship with her and, more generally, about relationships between couples when one of the partners is deafblind?

Lex: Let me say it like this: It takes a lot for a sighted and hearing person to be my partner: She needs to give information to me, read the newspaper, be my guide and interpreter, taking care of me in difficult situations and do the things for me which I can not do. I still have the question in my head: “What can I give back to her”? I can play music for her or give a massage but we are a working couple and very busy, so that does not happen so often. I still have the feeling of a wrong balance.

Marta: I too have an undisabled husband. We have been together for over 6 years. My husband is very intelligent and receptive. He gives me a “normal” life. He is a guide in my life (because, like most deafblind people, my social experiences are very limited). I know that I´m a “normal human” for him. But at one time there were many problems between us because of my deafblindness. For a long time we searched for ways to communicate comfortably together. I´m a very reserved person and have very low self-confidence because of my disability and some bad experiences in the past. In contrast, my husband is self-confident and sociable. He is a “typical stoic”. He often said to me: “Marta, either you´ll come out with me (he has always been willing to interpret for me) or stay at home. But I cannot stay at home all the time because of you!” I was unhappy about this for a long time. But later I understood that it was a “healthy” attitude. I realized that I have no right to restrict his freedom. Now we have a wonderful relationship. It survived only because of my husband´s patience and tolerance.

Lex: That is nice to hear. I am wondering if it is not so, in a certain way, that every close relationship brings certain restrictions of freedom with it. No, what first comes into my mind is: I have big difficulties in making decisions. Not in my work, but in private matters. I grew up in an institution where everything was decided for me and I am still trying to get over it. I am not so good at taking those kind of initiatives of going out or whatever funny things. I am not sure if that is only because I am deafblind.

Marta: During the writing of my thesis I found that I was´t the only one with such problems. Most deafblind people who were married to an undisabled person mentioned that their biggest problems were social isolation and communication difficulties. Many deafblind respondents told me that they often had misunderstandings because of their bad social communication. They even had problems in the sexual aspects of their relationship. Each of them had different fantasies. I have a feeling that many couples cannot talk about such things.

What do you think about this problem?

Lex: Beside what I have mentioned already, deafblind people are often socially isolated, relationships or not. I often can not follow what is going on amongst sighted people. They often talk more at the same time, with a lot of visual interaction, so I react wrongly. There is no time to explain to me what is happening around me and that is often a problem when we are together with the family. My lack of understanding of the emotions of my wife, and also my lack of being able to express mine, can cause misunderstandings. We really need to take the time to talk, but I have already explained how difficult that is.

Marta: While we are speaking about interpersonal relations among deafblind and undisabled people, I do find still that a lot of people (family members, professionals and others) often decide what is good for us deafblind people. Some deafblind people accept this in a passive way, while other deafblind people can say NO! It is understandable that undisabled people behave like this because many deafblind people have problems describing and explaining their feelings, needs, and wishes. I have the same problem. I need more time to explain my needs, but many people are either impatient or don´t want to understand it, because they are right! Then I and many deafblind people react crossly, to defend ourselves against it – maybe in an inadequate way. But for me such behaviour is a natural reaction.

What would you advise us deafblind people to do in such a situation … and what would you say to undisabled people?

Lex: This is a big lesson, a process for all of us. The best way for us deafblind people to learn how to deal with this is: “continue to ask questions”. If the questions are about this technical aid, or this living solution, or this activity, then that is really what I want to know. That helps to slow down the process of making decisions. It also helps me to get to know what I really want. And I say to sighted people: “With the new convention on the rights of persons with disabilities you are not allowed anymore to take decisions on my behalf. You have to listen to me”.

Marta: How should a “professional” in the deafblind field behave? What is a “real professional” in your opinion? In my view this is a big problem. Each “professional” seems to have their own ideas about what their work should be.

Lex: Yes, you can not change the fact that people and also professionals are different and I think that is human diversity and is not the problem. The problem is that we often cannot talk about attitudes and expectations. An ideal professional, whatever professional means, is open for such discussions, but that means that I also have to be open about my expectations and attitudes. This is a part of making a kind of contract between us about what, how and when we will do something together.

Marta: Last year in Finland we, the deafblind world, elected you to be the WFDB president. (I was a great fan of yours!!) What were your first feelings after your election? Had you expected it?

Lex: I was well prepared because I was already very much involved in all the work I am doing now. I knew that there could be another candidate at the last moment, but that did not happen. So, suddenly I was president! I was happy, because I wanted it, but I felt and still feel a big responsibility and I know it is a hard job with a lot of work to do. I have said: “I will work, but I will make mistakes, but if I don’t work, I make the biggest mistake”.

Marta: What do you want to do for the deafblind world as the WFDB president in the near future?

Lex: A lot! I said in the meeting: “There are four words important for me: networking, development, human rights and “a hug for me”. The last word was, as you may understand here, not only a joke. I want more international communication between deafblind people, helping each other to develop. I want more members of WFDB, and human rights in all aspects: awareness, education, employment, and a reasonable standard of living. The work goes slowly, but there will be results at the end. I promise you!

Life Stories

A Moravian Dream Holiday

Colin B. Bennett (England)

Gentle readers,

I am back from a very enjoyable break in Moravia up near the Slovak border. I left my home at 3 am on 11 August to walk to Pool Valley (Brighton’s Coach Station). I allowed over an hour for this journey which in daylight takes me half an hour. I was nearly at the Coach Station when I sprawled over a bicycle left horizontal on the pavement. Luckily I was not too badly hurt but very shaken. My white cane had got caught up in the spokes and was bent at right angles. This made it rather embarrassing to use. This episode reinforced the need for me to step up my campaign against obstructions on our pavements.

I arrived at Pool Valley about 4 am and was utterly alone. At about 4:10 am some people arrived from nowhere and then the Coach arrived. The bus driver tried to straighten my cane but as it is made of thin aluminum alloy, it broke. Therefore for two weeks while using this, my urbane image was damaged.

As always the National Express driver was helpfulness itself, even waiting with me until the connecting London Victoria bound coach arrived. The rest of the trip to Brno was fairly uneventful. This was mainly in the good company of two young West Indians from Lewisham (London) who were attending a walking holiday organised by Seventh Day Adventists. They were nice chaps but seemed utterly amazed that not every Czech could immediately understand their accent.

I found my way to Brno Railway station and was met by Radka a lecturer at the Special Education faculty of Brno University. Soon we were joined by three equally charming young Czechs, her students. They were Mariana, Lenka and Pabla. We had a most enjoyable train journey to Roznov pod Radhostem which is a pleasant former Spa Town. The journey was enlivened by train changes with only a few minutes to spare. This involved a lot of dashing from one platform to another. When we arrived at our destination we were met by Jana and also Jiri (Jirka) who is a lecturer in Special Education at Olomouc University (I visited Olomouc last year).

The location of the leisure centre Orbita where we stayed was exquisite being in the foothills of the mountains on the Czech/Slovak border. The air was pure, the scenery lovely and the company stimulating. I enjoyed a week of trips out including two mountain walks, a visit to the local Open Air Museum, tour of a Candle Factory, a session at a riding stable and several satisfyingly long adventures at local restaurants with copious Cesky Pivo.

Back at Orbita the food was good and plentiful although one Swedish participant moaned that there was no fish. I tried to persuade him that the Czech Republic’s relationship to the sea was slightly different to his native country. It is a cliche that the Czechs like their Dumplings. Some cliches are true …..

I had a wonderful time, spoilt rotten by the amiable Czech helpers, each one very well educated and gentle. I particularly enjoyed the two dances we had and am proud to say I learned the Czech Polka with a reasonable degree of confidence.

19 August was a sad day because most of the participants left for home including the large contingent of Belgians who played a very positive role in the holiday. I stayed at Orbita for a few more days as I wished to observe the half-yearly meeting of the European Deafblind Union. I shall be playing a bigger part in this organisation in the future and hope to post more about this in due course.

I had intended to travel back to Brno by train or bus and pick up the Coach to London as I had an Open Ticket. However Fortune smiled on me and it turned out that Petra who is the head of the Czech Deafblind Organisation called Lornm, and her colleague Marta, were travelling westward by train to Prague. Both Petra and Marta are graduates in Special Education from Charles University Prague. I travelled with them to Prague and this was a big help as there were two changes of train with again, not much time to spare.

Things got even better when Petra invited me to spend the evening with her in a Prague Restaurant. This was not a difficult decision to take. Finally, she put me on the Coach at Prague Coach Station at 9:30 pm on 21 August. I fell asleep immediately to be woken by a gentle shake by the German immigration officers. The journey back to Brighton was uneventful and I arrived just before 10 pm on 22 August. My dream holiday was over and the daily routine goes on. Before reality kicks in I must take this opportunity to thank the organisers of the 9th European Deafblind Holiday especially Jan Jakes and also all the staff at Orbita who treated all the participants with unfailing good humour and understanding. I would like to extend my thanks to everyone I met in the Czech Republic who was so kind and considerate to me in respect of my needs.

Our Hobbies and Interests

In the first edition of our newsletter we will talk about animals, even animals wth disabilities.

Animals are a hobby for many people in the whole world. I have always loved animals. My childhood was full of lovely hairy monsters. I had various mice, a tortoise, budgerigars, small fish, a cat and a dog. A lot of people couldn´t understand our little ZOO in our small flat. My mum has always said me, that an animal is equivalent to a family member. Because of my hard work, I now have only two spoilt cats, Tom and Jerry.

Animals have a positive effect on our mental condition, even our whole organism. You probably know about hippotherapy (horse riding) or canistherapy (treatment by dogs). I found an interesting internet article about Pet Therapy and the effects of various animals from St. Josephs School for the Visually Impaired in the USA.

Pet Therapy

Pet Therapy are just some of the names given to describe programs in which animals help people just by visiting with them. How was Pet Therapy discovered?

Pet Therapy was first realised in 1953 in America by a psychiatrist Boris Levinson, who worked with an autistic child and a dog. Levinson found that the animal provided the child with the opportunity to experience, internal and external sensations, something which, he was unable to do with other people.

Having taken note of Levinson’s discovery and success, other American medics began to take notice of how animals could be used to treat not only children but adults as well. In particular it was found that having introduced animals into a hospital for adults with psychiatric problems, there was a marked improvement in how the patients related to each other. Having first established a strong relationship with a visiting animal, relationships were then being made with other patients in the hospital, which in turn improved doctor-patient relationships.

Why Pet Therapy?

To look at Pets as a therapy, it is first important to look at pets in general. It is a known fact that pets in the home are good for us, but why?

Pets make us feel safe.
Pets return us to play and laughter.
Pets provide continuity.
Pets draw us out of ourselves.
Pets provide companionship.
Pets help us to exercise.
Pets provide physical contact and affection.

From research carried out on children and adults, it has been found that Pet Therapy can provide all the advantages of having a pet in the home as well as the following:

Aids Relaxation.
Lower Blood Pressure.
Boost Self Esteem
Animal Provides Emotional Unconditional Love and Support.
Tactile Stimulation.
Reduces Tantrums in Children.
Reduces Frustration. Aids Speech Development in Children (Dolphin Program)
Improves the ability to Relate to other living creatures.
Reduces Stress.

What Animals are Used?

A wide variety of animals are used in Pet Therapy. This is not to say that everyone will use the same animal or just one animal. The following will give some idea of which animals are used and for what purpose. Remember, sometimes the animals themselves provide much more to the person that anyone can imagine.

Dogs:

All breeds are used provided that they have the correct temperament. Dogs as well as providing companionship, relationships and movement, also introduce people with a disability to the concept of heat, tactile sensations, internal sensation, size and smell. Adult dogs are usually preferred as puppies can be difficult to control, but they may be used for to demonstrate the concept of growth and size as well as speed!!!

Cats:

Similar to the above, although cats are not as easy to train as dogs but will enjoy being petted for longer periods. Also cats are a good introduction to Pet Therapy if a person feels threatened by dogs.

Horses:

Horses, ponies and donkeys are used especially when the person has mobility difficulties. Here the horse can be used to give the person the sensation of movement as well as using the sense of smell, providing tactile stimuli, as well as the concept of size.

Birds:

When birds are used in Pet Therapy, they are usually housed in an aviary. During the therapy, the child is brought into the aviary and can experience the sensation of the birds in flight. Flight is a concept which is extremely difficult to explain to a visually impaired child. The birds not only give audible clues as to how they fly, but the speed can be felt as they fly past the child.

Fish:

Fish are used primarily as a source of relaxation. For a visually impaired child with a limited amount of vision, they can be a source of wonderment. The colourful variety of fish can engage the child’s attention and the slow moving motion, allows the child to follow the fish.

Small Animals:

Rabbits, hamsters and other small creatures provide excellent tactile stimuli for children. They can often be small enough to fit into the child’s hand and children are generally more confident in handling animals smaller than themselves. Animals with a short life span are also used to teach children about the life cycle of living things.

What Happens in a Session?

Before any child visits the centre for Pet Therapy, an introductory visit will be made by the child’s parents or guardians. During this time any allergies or fears a child may have with animals is noted. The Pet Therapist will then decide on which animal the child should be introduced to.

On the child’s first visit to the Pet Therapy Centre, the main aim is to make the child feel comfortable and relaxed. Depending on the child’s age and disability a short tour of the centre may be conducted. The child will then be introduced to an animal previously chosen as the most suitable for the child. This first introduction may be done in a special room, where the child, his parents and the Therapist will be seated. The seating in the room is very important. If the child can sit unassisted, then he can choose where to sit. Child size chairs, cushions, rugs and a large soft area should be available. When a child is not able to sit up, they may lie on the floor or in the most comfortable position for them. This is why it is important for the parents to attend the first few visits with the child.

Once everyone is comfortable, the child is told what is going to happen and, when the child is ready, the animal is introduced. What happens in the first session is entirely up to the child. If the animal is a dog, the child may simply want to lie on the dog, feeling it breathing and it’s warmth. Other children may want to stoke the dog or have it lick them. Some will even have a conversation with the animal. The first session is one of comfort and introduction. From here the therapist will get to know the child, what they like, what their ability is and how to structure the sessions, so that the child gets the most out of each Pet Therapy.

Children who are allergic to certain animals can also be brought to the Pet Therapy Centre. Although they may not be able to come in contact with the animals, the therapist will use many natural items to stimuli the children’s senses. Just being in the centre, will expose the child to the sounds and smells or animals.

As the children become more involved with the animals, certain fears may be addressed. In the case of children with tactile defensiveness (severe dislike of touching items), they will often touch the animal and then additional items, such as water can be introduced. E.g. The dog is drinking the water, can you feel it?

Pet Therapy Centre – Additional Uses

Offers Companionship.
Care of animals can be taught.
Visits to elderly in their homes.
Community volunteers can become involved in pet visiting programmes.
Other disabilities centres can visit and make use of the service.
Educational visits for primary schools can be arranged which can include care for the animals and life cycles.
Animal societies such as I.S.P.C.A. and Blue Cross become involved, by providing the animals and for information purposes.
The community can visit the centre, bringing further income. Special evening or Saturday classes can be held for children in the community. This teaches them the importance of caring for animals and also gives them the opportunity to be responsible for an animal without the pressure of owning it.
Local Pre-schools and Montessori classes can visit bringing very young children into contact with animals in a very safe environment. This will also generate income.
The Pet Therapy Centre can include a Natural Centre, which would include items such as e.g. pine cones, shell, wool, wood etc. This allows children with allergies to animals to also make use of the Centre.

References:

Franceo Angeli: PET THERAPY: Un Metodo Narurale.

Pets With Disabilities

Marta Zemanová (Czech Republic)

Even animals can to be disabled. They can suffer from birth defects or have become disabled due to illness or injury. Pets with disabilities have also their organizations and clubs, which are dedicated to helping and promoting the adoption of disabled animals into their enviroment. I was interested myself to find out if even deafblind animals live among us. I contacted the Disabled Animals Club in UK. I received an instant reply from Dr. Suzanne Combony-Hill from this club. You can read her letter below.

Hello Marta!

Your English is far better than my almost-anything-else! I’m glad you like our site. It’s there to help people who suddenly find they have a disabled pet and don’t know what to do next. We don’t hear too much about deaf-blind animals, other than those who grow increasingly deaf and blind as they get older, probably because it’s quite difficult to survive with that combination of problems. Cats are particularly at risk when they are deaf because they use their hearing to judge road crossing so, unless they are kept indoors permanently, they don’t last long near traffic. For dogs, it’s a little easier because they tend to go out with their owners but, having had two dogs develop deafness and cataracts in old age, I can tell you that is also quite hazardous. One got lost in the dark in a field and couldn’t hear me calling him, another knocked someone over by running straight into the back of his legs – it was a bit of a shock for all concerned!

If you want to put a message on the site to see if anyone has a deaf blind animal they could tell you about, just go to the message board and let people know about your interest.

Best wishes – and please say hello to everyone there!

Suzanne

www.disabledanimalsclub.co.uk

Mates

“I too had a disabled animal. It was a wonderful black-and-white cat called Mates. He had an birth defect in his eyes. The pupils in Mates’ eyes were missing, (acorea). So he was almost blind. His eyes were azure. I had a feeling that Mates didn´t suffer from his disabilites. He was a clever, active cat, and always hungry. I keep in my mind what one veterinarian told me, that my cat would never catch a mouse. I did not mind. Why? I don´t eat mice. But when Mates was 3 months old, he played with a mouse next to my house in the country! Than I noticed that Mates moved with lightning speed. He had excellent smell and hearing, therefore he has ‘elephant’ ears with long hair. We often said for fun that instead of ears he had ‘radar’.

I suspected that Mates has vision which is like mine because he perceived dark subjects against a white background or conversely. He often played with a dark mouse on the light surface of an unfenced tennis-court. But he often bumped his head against a closed glass door. Therefore all doors in my house had to open.

Mates lived for only two years. A car ran over him 3 years ago. He has his grave in our garden, which is much loved. His life was very short, but full of love and understanding”.

Meetings and Conferences 2007

The Third EDbU Executive Committee Meeting will be held in in Prague, Czech Republic, from 22 – 25 February 2007.

More information on the EDbU meeting will in the second edition of the EDbU Newsletter.

The 10th European Deafblind holiday will be held in Sogne, Norway, from Monday the 6th to Sunday the 12th of August 2007.

The 2nd EDbU General Assembly and 6th EBU Deafblind Conference will be held in Zagreb, Croatia, from 5 -10 October 2007.

The conference will be centred on ‘Deafblindness: Equality amd Diversity’. More information comming up!

Contact:

The Croatian Association of Deafblind Persons “DODIR”
GSM: +385 91 8981313

E-mail: edbu2007@dodir.hr

14th Deafblind International World Conference will be in Perth, Australia, from 25 – 30 September 2007.

The 14th Deafblind International World Conference will be held in Perth at the Burswood International Resort Convention Centre. The Conference will be centred on the theme of Worldwide Connections: Breaking the isolation.

You can find more information about the conference at:
http://www.dbiconference2007.asn.au/

Review

Information about publications and literature on deafblidness

You can look at a publication from DbI (Deafblind International) at:

www.deafblindinternational.org Developments and Innovations in Interpreting for Deafblind People. This publication is also available in
PDF format.

Other Literature

You can find a wide spectrum of literature on deafblindness in English at these websites:

http://www.deafblind.co.uk/biblio_unsorted.html from a Deafblind Web Resource

http://www.ssc.education.ed.ac.uk/library/db/db.html from the Scottish Sensory Centre

http://www.tr.wou.edu/dblink is a very useful American website with links to many other sites, including some in Spanish. It is the website of The National Information Clearinghouse on Children Who Are Deaf-Blind.

You can visit the SENSE website at www.sense.org.uk. There you can find all its publications and its library athttp://www.sense.org.uk/publications/.

Also, you can find literature on ´Combined hearing and visual impairments in the peroxisomal biogenesis disorders´ at:http://www.pacifier.com/~mstephe/irddb.htm