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Names have been anglicised
to make the text more widely available on computers without Scandinavian fonts.
No lack of respect is intended.
Electro-Hypersensitive People's Right to an Accessible
Society
DVD Box Sleeve:
Stockholm County Council
(SLL) and The Municipality of Stockholm hosted a seminar entitled
Electro-hypersensitive People's Right to an Accessible Society.
The seminar described
different measures taken to offer people with the disability of Electro-HyperSensitivity
(EHS), the possibility of living a life like everybody else in society. The
seminar was held May 8, 2006 and addressed all interested civil servants and
politicians in the local government and County Council.
The two disks of the
proceedings contain:
An opening speech by Vice
Mayor in charge of Social Services,
Margareta
Oloffson.
Recent legislation and
activities in the municipality of Stockholm presented by Johan Bonander, researcher at the local health
and welfare department in the municipality of Stockholm.
Motions proposed and
decisions taken by the County Council regarding housing modifications, disabled
travel services and other measures to ensure electro-hypersensitive people's
access to society presented by Inger
Hallquist-Lindvall, political secretary.
Johan
Sjolander, Chairman of the Board for
Disabled Transport (Paratrasit) Services.
Electro-sanitizing
Modifications in Houses and Healthcare Facilities presented by Lars Rostlund.
The representative of The
Swedish Association for Electro-Hypersensitives (FEB) for Stockholm, Sonja Akerberg.
Closing speech by the
Disability Ombudsman for the municipality of Stockholm, Riitta-Leena Karlsson.
Further
Information: johan.bonander@sot.stockholm.se
T:08
508 25 003 Int: (+46) 8 508 25 003
Disk 1:
Introduction by Margareta Oloffson, Vice Mayor in charge of Social
Services.
Welcome to this unique
conference about electro hypersensitive people's right to an accessible
society. This conference is unique in
that we have invited many civil servants and politicians from the municipality
and local government in Stockholm. With
us today are also civil servants from the Ministry of Health in Norway,
handicapped organisations from Norway, representatives from the municipality of
Trondheim, the City of Stockholm Disability Board and electro hyper sensitive’s
organisations in Sweden and Norway. And
of course everyone else here today, you are all very welcome!
The seminar today will
address mobile free zones in the subway, electro sanitized cars for
para-transit services, electro sanitized rooms in emergency and local hospitals
and also cottages to rent with low electromagnetic radiation for electro
hypersensitive people. Having said that, I hope all of you realise that mobile
phones should be turned off. This is
always the case during conferences but they should be completely turned off,
not just on silent.
We will start the seminar
by listening to what has happened in the municipality of Stockholm. I just spoke to someone outside his room and
said "Do you remember, we must have met at the conference in 1994?"
That is a while ago, 12 years to be precise.
It was held in rather dark room without all the electronic devices we
have here today. And we told everyone
then that mobile phones must be turned off during the breaks, as we do
today. If you need to make a call, then
we ask you to step away for a while.
Hopefully things have changed since then. The purpose of that conference was for the
government, scientists and the organisations of electro hypersensitives to meet
and have a dialogue. Unfortunately it
did not turn out too well. It was hard
to establish a dialogue between the electro hypersensitives' organisations on
the one hand and scientists and representatives of the government on the
other. But it created a foundation we
could build on.
We from the Socialist
party... I have just realised I have not introduced myself! My name is Margareta
Oloffson and I am the Vice Mayor in Stockholm...and I am also a member
of the Socialist Party. I am going to
tell you about the two propositions we put forward for which we got positive
feedback. The first one was put forward
in 1994, which concerned the need to build new developments for
electro-hypersensitive people, and the proposition received a positive
response. In 1995 we took one more step
with a second proposition to enable hypersensitive people and those injured by
computer screens to receive financial support for home modifications and home
service for these people under the same conditions as people with other
injuries or disabilities. Education on
electro hypersensitivity should be given to those responsible for subsidies for
home modifications and creating electro-sanitized homes. We also suggested that the most risky
electromagnetic fields could be mapped out, including a calculation of the
expenses needed for action to limit the chance of injuries. All of these things were not realised, but
they met a positive response and that took us a bit further. After the presentation, you will hear Johan Bonander speak about what happened in his
field in the municipality of Stockholm after these propositions were
addressed. Things do not always move
quickly when it comes to decision making and execution. But hopefully a few things have changed. We have kept working on spreading knowledge
of electro-hypersensitive peoples' situation.
We realised that these people need to know where mobile phone masts are
located but the National Post and Telecom agency did not want to publish a
complete map of masts. Therefore, we in
the Socialist Party started to create a map ourselves. People who live in the city have the right to
demand information about masts close to their homes. For example, we could write and ask
"What masts are installed in my area?". This is how we managed to put the pieces
together and create our own map. It
covered the inner part of the city and most of the suburbs. We published this map on a website in May
2005. Afterwards the Swedish Government
decided to commission the National Post and Telecom
Agency to publish the location of all the mobile masts in Sweden on their
website. So things are moving
ahead, which is always nice to know. We
have managed to make some progress, but lots still has to be done, especially
at the governmental level. Because even
if it is not visible, it might exist. We
need independent research on the risks of electromagnetic radiation. The precautionary principle should be used
until we know how dangerous the radiation is. We would like the government to
legally enable the local authorities to establish low radiation zones. With that we thought
we had won a great deal but unfortunately we did not succeed because of
new infrastructure. One of the mobile operators
put a mast in the area. We would like to
change this. The operator is not the
only one who should have rights! There
ought to be Free Zones.
Electro-hypersensitivity is today classified as a physical impairment,
which I think is a step forward. This is
new. Understanding of this topic has not
been good. We have many things to
accomplish to be able to create zones with low enough radiation so
electro-hypersensitive people can live and work like everybody else. And, in the future, one has to consider very
carefully how to construct and behave in ordered to not create more
electro-sensitive people. With this, I
once again would like to welcome you to this conference. I am fully convinced that we will walk out of
here today much wiser than when we came in.
Recent Legislation and
Activities in the Municipality of Stockholm - Johan Bonander
My name is Johan Bonander, and I work as a researcher
in this building at a small department called Staben. Staben has the task to follow-up on
disability issues within the City of Stockholm. We educate staff and create new
guidelines and policy documents. The
issue about electro-hypersensitivity was raised by coincidence about four years
ago. The Swedish Association for Electrosensitives approached us during the EU
Disability Year and asked; "Please could you raise the issue of
electro-hypersensitivity in some way? We have had a hard time and find it
difficult to make our voice heard."
We arranged a conference
in 2003 with a similar name to this one. It was arranged in cooperation with
the Swedish Association for Electrosensitives, as today's is. We had
representatives from the organisation telling us about their disability, the
National Disability Ombudsman, the Disability Ombudsman in the municipality of
Stockholm; Riitta-Leena Karlsson, who you will
meet later today. We also had some
technicians who displayed how easy it is to drastically reduce electromagnetic
fields from high-frequency fluorescent light and low energy light bulbs. They put up some equipment and showed how to
reduce the fields in a simple way. Olle Johannson from The Karolinska
Institute talked about his research into electro sensitivity and Rigmor Granlund-Lind, who is also here today talked about the book she has put
together called Black on White, which was brand-new
at the time. A big government
investigation, called RALF gathered testimonies of what it is like to be
electro-hypersensitive and people told about how the symptoms start, effects on
everyday life, social life etc. These
testimonies were stored at the Ministry of Industry and never published.
Eventually they were turned into a book and I, along with many others, find
reading it both interesting and scary.
It is now possible to have a copy for free. You can find it outside the door. Before the conference three years ago, we
conducted quite a lot of research. Some
of the research consisted of me looking into how electro-hypersensitive people
live. Whether their homes were
electro-sanitized and what precautions had been taken. We studied the scientific research and other
information available. I was convinced
that we were facing a major change and that it would happen any minute now. It was so obvious. One could just not ignore this group of
electro-hypersensitive people. It was
obvious society had major things to do here.
But as the conference approached, things turned out to be more
problematic. We experienced quite a lot
of resistance. People from the Swedish
Radiation Protection Authority called and questioned the purpose of the
conference, as did representatives from the mobile phone industry. They also called the politicians in charge
and ask if this conference was really necessary. This would never have occurred with other
disabilities because nobody ever contacts us from any governmental authority to
question the basis of a conference. Over
the years, I have sometimes been invited by electro-hypersensitive peoples'
organisations to talk about legislation and have met a lot of people who have
told me their stories. The scary part,
from a humanitarian point of view, is that presently people with
electro-hypersensitivity are often treated badly in this country that we live
in today. We look forward to when we can
meet people and offer them electro-sanitized homes and when we can offer
cottages for recreation in low radiation zones.
There is also work in progress to build a small village. I will tell you more about that later. The interesting thing is that one often
encounters a media picture of electro-hypersensitive people confined to
cottages without electricity, or in a caravan or a tent, completely cut off
from society. There is often a fourth
picture, and yes, there are people who live in the woods under such conditions
but as far as I know, this is a fairly small group, about 200 - 250
people. Even so, it is a horrible
situation of them. But the latest
estimate, based on 36,000 people in Stainer, in the south of Sweden gave us a
figure of 9% who thought of themselves as sensitive to electromagnetic
fields. In an earlier public-health
survey, 250,000 - 300,000 Swedish people reported problems with electromagnetic
fields. With these figures we have by
far surpassed diseases like diabetes 2 and psoriasis. All in all, a lot of people are experiencing
problems with electromagnetic fields, but out of this very large group, very
few have severe problems.
Among those
who experience major problems, some claim it is because they never took the
minor problems they had seriously.
Sometimes employers have been unwilling to modify working conditions,
claiming that it was just imagination.
Sometimes the person themselves does not want to believe what is going
on. People are rather fond of
technology; the computer, the mobile phone and the wireless connection. People do not want to take the symptoms
seriously and this creates a risk of the situation getting worse. I particularly remember a woman who worked in
Karlskoga when new computers came in the 1990's. Some computer screens were more or less like
radiation guns. She told me she wore a
Santa Claus mask at work, which she had covered with aluminium foil. Even so, she had wounds on her arms and
hands. This is scary, but it is even
scarier if we do not take the disability of electro-hypersensitivity seriously. There is a risk that we will see more people
with serious problems. It is not
economical, it is not wise, but most of all, it is not very humane.
Another
association that I have made over the years was when I was 16 or 17. My best friend and I were about to make a
choice for further education, he said: "We have to choose medical school
because there are so many girls there." and he was right; there were a lot
of girls from all over the county (Vaster Gotland). It was fun, but not the
part when we walked through wards of the toughest psychiatric cases. We were given exemptions, since we attended
this pre-medical school. They were
treated like cattle and washed with hoses and were talked about in a very
derogative way. Then to the huge wards
where there were 7-10 people in each room. That encounter ruined parts of my
picture of what kind of society I lived in.
No one had told me about this, not my school or my parents. But the scariest part was when I went home to
my parents and neighbours and talked about it.
They did not want to listen. They
would rather leave things the way they were.
There is a
parallel to what we are talking about here today: if one does not take things
seriously and takes the trouble to listen, it produces strange human
behaviour.
I have two
examples:
One during an
aid program for "Children of the World" a couple of years ago.
This Swedish
comedian is playing around, pretending he is electro-hypersensitive. He acts generally itchy and stupid. He is followed by another comic show with
another comedian who looks into the screen and says: "Now I'm going to
tell you something which those of you who I am addressing cannot accuse me of -
because you cannot watch TV! I hate you electro-hypersensitive
people."
How is this
possible? Such a thing would never be
said to anyone with defective vision or with a hearing disability. There is no chance! But this happens to the
electro-hypersensitives. People like to
brush this impairment aside and it produces these kinds of manifestations. Historically we know such attitudes can make
us lose direction.
When I have
travelled around the country I have met many people who have suffered a
lot. This is due to the narrow-minded
approach of the Government. As the
impairment is not scientifically proven, they claim there is no need for action
and it is on this that employers lean.
It is possible to use this argument as a reason not to take action. Despite all the electro-hypersensitive people
who say: "I feel much better when my surroundings are sanitized from
radiation, if I receive tools that adjust to my needs. I want to work, I want
to be part of society, but I do not want to work with computers etc."
This is
exactly what a disabled person is entitled to.
We have a
wheelchair slope here. Someone in a wheelchair should be able to make a
speech. This ramp is a new addition.
When the head of the Department for Disability Issues was coming to hold a
speech, we realised: "Oh, it would be appropriate to have wheelchair
access here."
So we all have
something to learn.
If you look at
the legislation that a municipality and the National Insurance Agency has to
obey, the laws are connected to the concept of environmental disability. A person is disabled only when the environment contains some kind
of impediment. One rarely talks about
diagnosis as a right to receive support.
The exception is the Swedish Act concerning "Support and Services
for Disabled People" which encompasses three spheres:
The first
sphere includes people who are mentally retarded or autistic. The second includes people with severe brain
damage and both groups automatically fall within this law. But there is also a third sphere which
proceeds from the individual's needs due to their disability.
The disability
legislation follows the concept of environmental disability and this derives
from the UN 22 Standard Rules for Participation and Equality for Disabled
People. Sweden used these rules and
developed a National Plan of Action regarding the politics of disability
issues. In 2010 Sweden is supposed to be
accessible for all groups of people with disabilities. UN 22 Standard Rules and a National Action
Plan have been interpreted differently in many municipalities. In Stockholm, we have a political disability
programme. I think Riitta-Leena will tell us more about it later, and we have
one Disability Council in all public administrations and sometimes in
companies. They are involved in all
issues concerning disabilities. One
cannot escape this kind of law as is illustrated by the statement of the Lower
Court in Gothenburg concerning a case where a woman was applying for financial
support for travelling to work since she was unable to use public
transport. She had, among other things,
problems with all mobile phones as used on public transport. She turned to the court and the court's
reaction was this:
"The
correlation between exposure of electromagnetic fields and different symptoms
is not scientifically proven, a correlation is neither proven nor
disproved. Many patients with light or
less extensive problems can be more or less symptom-free with help from a combination
of interventions, usually including some kind of sanitizing of electric
fields. Her obstacles travelling to work
cannot be proven with current scientific knowledge, but they should not lead to
denying her support as she is in need of it."
This was a
statement from the National Board of Health and Welfare sent to the court in
Gothenburg. Case No. 444-1998. It was the medical adviser from the National
Board of Health and Welfare, Mr Svartling, if I remember correctly, who made
this statement. A similar approach could
be seen when the National Board of Health and Welfare's Department of
Disability Issues gave statements about these questions. But the National Board of Health and Welfare
is a big unit and there are others who interpret the question of
electro-hypersensitivity differently.
This could be seen for example in the "Guide to Financial Support
for Modifications to Homes." They
go back to two statements made by the National Board of Health and Welfare in
1991 and 1995 where the National Board of Health and Welfare claimed that it is
impossible to prove the impairment. But
in parallel to this, we have Mr Svartling, who says:
"Even
if a correlation between exposure to electromagnetic fields and symptoms cannot
be proven, this may not result in denying support."
This is in
line with the UN 22 Standard Rules and in line with the Swedish laws. I will just mention, it is interesting that
the National Board of Housing and Building have a manual on their website where
they say:
"Although
there is no such thing as Electro-Hypersensitivity, we know that many people
are helped by electro-sanitizing their homes."
So things are
moving ahead.
Three years
ago, the National Radiation Protection Board, claimed there were no reasons to
worry. Now they have changed the message
on their website and say:
"There
is some reason to be concerned about health effects."
Things do
happen, but from the electro-hypersensitives point of view I think it takes far
too long. When Stockholm decided to
include the rights of electro-hypersensitives to sanitize their homes, it was a
reaction to what has been.
The issue was
discussed and prepared in the municipality.
I am going to read the board's motivation:
"Today
there are many people who are electro-hypersensitive in Stockholm - people who
are impaired due to their electro-hypersensitivity. Scientifically, there is no undisputable
knowledge of the medical reasons for electro-hypersensitivity. We know that all living cells in animals and
humans are affected by electricity and this new and very complicated area is
already very extensive and growing rapidly.
On the other hand, experience shows that electro-hypersensitivity is a
reality. Some computer screens and other
electric devices are the triggering factors.
The city will work to minimise negative health effects and as far as
possible use the precautionary principle by taking protective measures before
evidence is available."
The
departments referred to for consideration in this matter agreed that measures
should be taken so that electro-hypersensitives can live and work in the city
in a way that reduces their problems. One of the referral departments writes:
"Many
people feel they have substantial problems with electro-hypersensitivity. Different scientific reports discuss whether
these problems are due to electro-hypersensitivity or not. Regardless of who is right, people who
consider themselves as Electro-Hypersensitive in many cases claim they become
much better if their homes are electro-sanitized. This result is important for the individual,
regardless of whether electro-hypersensitivity exists or not. Financial support
for home modifications is to be considered in respect of each individual in the
same way. This is done for people with
other needs, regardless of medical diagnosis."
This is how it
it is done in Stockholm. If one is
electro-hypersensitive, one turns to the Stockholm City Planning Committee Department of Housing Modifications who send
a technician to evaluate the radiation in the house and he will later come back
with suggestions of what to do. These
suggestions might look quite different depending on what the house is
like. A lot of the time the wiring is
changed to use shielded cables. If there is an old fuse box, it can be
replaced. If there is centralised
municipal heating, they sometimes eliminate the fields by using plastic
connectors. Lars Rostlund, who is a technical consultant, will talk later about
how to sanitize hospitals and he will partly mention homes too, I think. Other modifications could be painting with
shielding paint which protects people from electromagnetic fields. There is thin plastic foil for the windows
and they can also install a transformer to clean-up the electricity supply.
Well, how much
is it? Is it expensive for the
city? Between 1996 and 2000, the cost
was 1.8 million Swedish Crowns (£132,000), that is 300 - 400,000 (£22,000 -
£33,000) for each year in a city like Stockholm with 750,000 inhabitants. This means, there are no great expenses. It is not big money. They are now other cities who follow
Stockholm; for example Enkoping. You may
contact them if you would like to study what the process is like in other
municipalities.
A formal
decision is needed before granting such financial support. You cannot just hand the money out, you have
to legally come to a decision. This
could be consistent with Chapter 4, second paragraph of the Swedish Social
Services Act - decide to grant financial support to home modifications for
electro-hypersensitive people. In
Stockholm we have used the current law concerning disabilities, UN 22 Standard
Rules meaning one should not exclude people from the right to the help they
need.
Well, has this
helped? Yes, it has, but there is also a
time continuum to observe. Those who
received help early on, then came in contact with things like neighbours who
bought cordless telephones, new masts nearby and wireless networks. Then the things that had been done earlier
were not sufficient and they had to move from the city. When we arranged the conference in 2003, even
people in this building were sceptical.
But things changed. After the
conference my superior said: "Well we have to think forward." She then bought new flat screens, and bought
low-radiation headsets for our mobile phones.
Some of us were able to change our mobiles to ones with less
radiation. This is caring for ones
co-workers. On the other hand, the
problem we are facing is one of class distinction. All of us here today are well educated and
well paid. It was a rather small
investment since we were a rather small group of people. What would happen if all the cashiers at
Willy's ignored some of their duties because they felt ill? There is great risk that employers will claim
the symptoms do not exist.
This is where
we are today.
Do we want to
help or not? Do we want to listen or
not?
That is why it
is so pleasing that during these three years, a lot has happened. Not the least that which Inger is going to
tell you about in the Stockholm County Council.
The actions taken were based on propositions sent to the County Council
where the Municipality of Stockholm and the local Board of Health and Welfare
were the referral bodies. I'm going to
read an excerpt of some of the answers we gave them.
"During
research prior to the conference in 2003 we found disagreement about
electro-hypersensitivity. There was on
the one hand the National Board of Health and Welfare, the National Board of
Housing and Building, the Swedish Work Environment Authority, and the Swedish
Radiation Prevention Authority, and then there were the Electro-Hypersensitive
people themselves. Those who are
affected lack confidence in the government's approach to disability issues and
think it is characterised by lack of interest and has low priority within the
government. Mind you, despite the
uninterested surface, it became evident that this is a delicate issue. It was for example difficult to recruit
people to a plan discussion. From the
government's departments or other authorities, there was no one who
participated. The local Department for Health and Welfare, the City Council and
the Opposition's Commissioner got a mail from the Swedish Radiation Institute
and Mobile Phone Industry - MTB. Both
authorities had the view that the conference had the wrong perspective and
asked for the government's view on the issue.
We also found a rather poor general knowledge of
Electro-HyperSensitivity. Most of the
knowledge derives from research within the field of psychology. They have looked for psychological reasons to
explain Electro-HyperSensitivity. It is
also often within this field that government departments search for support for
their approach. At the same time one can
see that theories have not helped the electro-hypersensitive people. Therefore, there is a request for further
research within the medical field."
Then we
preceded by writing this:
"Generally
the local Department of Health and Welfare think it is important to point out
that the development of the technology for mobile phones and other cordless
technologies has been done at such high speed that it is impossible for science
to keep up. To prove new technology
dangerous on a scientific level is therefore only possible with years of
delay. Free and unbiased research within
this field has little money, not least in Sweden."
The majority
of all research is paid for by the mobile companies themselves and they decide
what questions to explore.
I had stepped
into the area of unexpected health effects from mobile phones. This was a question for the County
Council. This is not our approach here
today.
We talk about
electro-hypersensitivity as an impairment and about the right to equality with
other human beings. But as both issues
come together, I cannot help wondering why people have such a guarded approach
to these issues and do not want to discuss health affects more openly.
Considering my
own four children, I am not happy about the answers I receive from the
Government. All this belongs to another
seminar, but I still want to mention it.
I was once
asked. "What would happen if
someone is electro-hypersensitive and applies for support and you found out the
house was mouldy? It might be their house that triggered the symptoms. What would you do about that?"
The answer is:
it would be great to find out more about it, and cooperate in an unprejudiced
manner with doctors to explore more within this area. Then one could find out what caused the
sensitivity. Maybe
electro-hypersensitivity in many cases is a reaction to something in the body
that is not well. Many
electro-hypersensitives themselves describe it like that, and often associate
it with dental injuries.
Now I will
open up for questions.
My name is
Helena. I am from the local government,
and I have a general question about children. How could one electro-sanitize
schools?
In Norway the Children's
Representative firmly stated that children should not use mobile phones. In Sweden the Radiation Protection Board says
on their website that children should use a headset. There are no consequences for other
government departments, no one takes action.
I often visit the Varmland (in the
north-west of Sweden) where people are giving up their landline phones. They only used a mobile phone even though
they live many kilometres from the nearest mast. Teenagers have free phone subscriptions and
sometimes talk for hours. They even have
the phone on their pillow when they sleep.
The last research published about brain tumours and mobile phones
estimated a 2.5 times rise in the risk when talking for one hour a day, five
days a week during a period of 10 years.
And I'm talking about children and young people. You do not need to be an Einstein to realise
we are beating around the bush.
I brought the subject up
at kindergarten. There they use a
cordless phone, which of course is very convenient when working with small
children, but there are brands with less radiation. Most cordless phone base stations emit
signals all the time like a mobile mast.
It is a bad technique. I asked
them to buy another one and also brought them some information leaflets but
nothing happened.
I would just
like to mention; I visited a private school to hold a lecture some time
ago. The children attending the school
have rich and powerful parents. The
school had a very strict policy. They
said to the children. "You are
tomorrow's business leaders, bankers and politicians. You have to be careful
about your health." That is why
they have very strict regulations regarding how and when to use mobile phones
and computer screens. This indicates
that the management knew that it might be dangerous.
But I had to
ask "Why do you not turn to the rest of society and demand this safeguard
for all children?"
Yes, this is a
problem. There is a class
differentiation. At my office I have a
good electro-environment but as soon as you stop asking questions it becomes a
class distinction. It is dangerous only
to rely on the government to provide information. If one does, one will make a
mistake.
One more
comment. If one looks at the big
insurance companies, for example Lloyd, and asks what is not covered when it
comes to personal insurance, there are two exceptions; the first is damage
caused by genetically modified food, and the second by electromagnetic
radiation.
More questions?
You mentioned
the possibility of renting cottages for recreation. We work for that department but we are sorry
to say there are not many cottages today. Do you know
when more will be available?
No, I do not know, but we
can come back to that. There are other
people from the municipality here today.
There are many
people who are looking for cottages.
Yes, many people look for
houses in low radiation zones. One has to be firm about these zones when new
infrastructure legislation is being decided.
The City of Stockholm used to make sure that there were no masts near
cottages where electro-hypersensitive people lived.
I have contact with an
electro-hypersensitive woman who is on the disability board in Farsta. When
she arrived there for the first time she had to ask them to turn off the
high-frequency fluorescent light and a conventional computer used by an
interpreter had to be changed. There was
a problematic light in the hallway
shining into the room which also had to be replaced. So they brought in a technician and made the
changes and today it works well. This
was a good place for the rest of the board to learn about the situation for
electro-hypersensitives. Sometimes I tell
people about this when I lecture to local disability boards. Mind you, it is sometimes sad to meet the
relatives of electro-hypersensitive people. As many electro-hypersensitives
find it hard to visit the lectures, I often meet their relatives instead. Once there was a man who told me that he and
his wife used to visit churches to listen to music. Now they have changed the
lights to low energy bulbs it has made it impossible for his wife to attend. This is very sad. It would be so simple to have a part of the
church conventionally lit. There are
similar stories regarding libraries. It
would be very easy to use ordinary lights during lectures so that everyone
could attend.
On the other hand, we
still have a lot of work to do. There are 43 different disability organisations
in Sweden and there are constant requests for things to be done for the ES
group. Even so, this group must be given
the opportunity to speak. This is a
group who has difficulties in attending regular meetings in non-sanitized environments. That is why we have to pay particular
attention.
Governments and
representatives from Switzerland, Austria, Norway, Japan and Sir William
Stewart of the British National Radiological Protection Board have contacted
the municipality of Stockholm. They are
all interested in the work we have done.
They take it seriously. When
people from other countries call and one starts to compare what it is like
elsewhere, it is obvious that a few good things have happened here over the
years. Amongst these are the decisions
made by the Stockholm County Council over the last couple of years. I feel pleased to work in this
organisation.
And now we...Yes?
If one adds up
all radiation, there has to be a lot of it.
I wonder, how do you measure it?
That is a topic that could
generate several other seminars, but now we have to take a break.
Disk 2:
Inger
Hallquist-Lindvall - Decisions by
the City Council Regarding Housing etc.
My name is Inger Hallquist-Lindvall and I am from the
Stockholm County Council. I am a
political secretary in charge of disability questions, among other things. I am
standing in for Lena-Maj Anding, who is
politically responsible for and Chairman of the County Council Medical
Programme. Unfortunately she could not be here today, but as a political
secretary I have handled these questions.
I will tell you how the County Council has acted during this mandate
regarding electro hypersensitivity and exposure to radiation and
electromagnetic fields. This is a
cooperative endeavour between the Stockholm City Council and the Stockholm
County Council. The Health and Hospital
Committee in the County Council decided that we should participate. This was originally suggested by "Medical Program Preparation Committee No.3" which
is a committee where all parties are represented and is responsible for
disability questions, environmental medicine and for public health. The last part is interesting even though we
do not touch upon it that much here. So
far we have focused on the concept of impairment as it has been the best route
to follow. Next we will look at public
health issues and their medical effects from a larger perspective, but we have
not come that far yet. I tried to bring
the minister responsible for this issue along, Berit
Andnor, but she could not find the time.
I also contacted the National Disability Ombudsman who referred
me to the new department but they did not have the time to attend either. Anyhow, in the County Council we have been
able to address the issue thanks to two motions. The first came from
Lena-Maj Anding at the end of the last mandate in 2002. After that came a motion from a
representative of the "Moderaterna" (Conservative
Party). The motions had quite a similar
content and we turned them into one. We,
the Social Democrats, the Communist Party and the Environment Party had the
majority that enabled us to deal with them.
On the 7 June 2005, we took three decisions:
The first was to create a
policy regarding electromagnetic radiation and electromagnetic fields that we
can apply in all of Stockholm County Council.
To be more hands-on, we also commissioned the public transportation
company Storstockholms Lokaltrafik AB (SL) and the Para-Transit Service to look
into and take suitable steps to improve the possibilities for electro
hypersensitives to use public transportation and para-transit services. This was made even more specific when it came
to SL themselves. It was decided in the
budget of 2006 that there had to be mobile phone-free zones within transportation. This put some pressure on the politics in
order for something to be done. With
this in mind, the budget document was written with a strong political will. When it came to the Health and Hospital
Committee, it became a mission. They
were asked to offer a service in modified rooms and if needed, home visits and
to also co-operate with the local government if someone needs an evacuation
home, when under rehabilitation or when they are undergoing treatment. This was also made very clear. The propositions were extensively circulated
for comments. This was done for several
reasons; we wanted to hear others points of view, but also to firmly establish
the issue as part of the political agenda and involve many different
groups. The politicians accepted their
responsibilities and included the issue on their agendas. We also chose to reach outside the County
Council in our circulation, which obviously was unusual. I had a hard time getting administration to
send things outside the County Council. I have slides that show who we received
comments from.
We got answers from: The
County Council Disability Board, the Board of Para-Transit Services, the
Cultural Affairs Board, The Patients Advisory Committee, the Office for
District Traffic Planning, the South Hospital District, Danderyd Hospital, Norrtalje Hospital, Soder Hospital, Sodertalje
Hospital, Locum - who are responsible for the care of houses, SL, the
Swedish Association for the Electrosensitive, Swedish National Institute for
Public Health, the National Board for Health and Welfare, the Social Welfare
Board of Stockholm and the Swedish Radiation Protection Authority.
Some organisations did not
answer. I do not have any slides with them on but these are some of them: the
Karolinska University Hospital, the Stockholm County Association of Local
Authorities, the Swedish Society for Nature Conservation, and Waxholm Antsartyg
AB.
The responses we did
receive were generally supportive. There were two exceptions: the National Board for Health and Welfare and
the Swedish Radiation Protection Authority.
They emphasised very strongly that this was not scientifically proven. I
have a feeling this will become a very interesting document in medical history. I think it is rather unwise to make such
determined statements the way they did.
I have some other
statements with me which are interesting for future work within the City
Council. This is a comment from SL which is included in the political
majorities addendum: " The accessibility is of such importance that SL
should begin to develop a project in close cooperation with the
user-organisations". This again
is the citizen perspective.
The next slide is a rather
poor one, but I would like to share it with you anyway. It is a statement from the Para-Transit
Service included as an additional comment beside the statement of the civil
servant. "We wish the
Para-Transit Service Board to look into the possibility of vehicles being
modified to enable electro-hypersensitive people to use the facilities by for
example, turning off some of the electronic equipment."
Today the Chairman of the
Para-Transit Service is here. Maybe he
can tell us how far they have come.
Maybe you would like to say something right now? No?
Okay. We will proceed with this
instead.
This is some of what came
up during the circulation for comments.
It became evident that there are no electro-sanitized hospital rooms
within the County Council's area of responsibility. The only one to be found was at the
"Patient Hotel" at Danderyd Hospital.
It is very meagre compared to other county councils, some of whom have
only recently started electro-sanitization.
I have also brought some of the statements from the Medical Program Preparation Committee No.3 where
they expressed the need to develop knowledge about the impairment and about the
long-term effect on public health. There
are also comments about the need to find strategies to quickly lessen the
exposure, when one becomes electro-hypersensitive, as Johan Bonander mentioned
earlier. The committee stressed the use
of the precautionary principle when knowledge is incomplete. As I said, it was possible to start working
with this issue from a disability perspective and in that way lessen the level
of exposure.
In step 2 we have to deal
with the scientific discussions. We
would only end up disagreeing with each other so long as the authorities'
attitude is the way it is. That is why
we acted like this. We saw that you in
the municipality of Stockholm seemed to succeed using the disability
approach. That has proven to be a
constructive way for us too as we have seen our suggestion approved.
This is written in the
County Council's text before reaching the specific commitments: "Electro-hypersensitive
people are going to receive a respectful reply and support to ease their
disability even though we cannot altogether explain the physical reactions
within the scientific paradigm."
The file became this thick
with comments. There is a lot of
interesting information to read. But
what will happen to it being actioned?
This is a slow process. But there
are things happening, maybe Johan could come and tell what the para-transit
service is doing.
Now I will show you my
last slide. We are planning to have the
policy ready in June 2006. The policy is
thought of as an opportunity to educate within the County Council. When we make the policy known we also
underline things like respectful replies.
We also talk about what could be done with little effort. Things could happen fairly quickly. At Locum they deal with room adjustments and
building modifications. We will demand a
report from them before the summer. We
would like to know what has been done, and what the time schedule looks like.
I am now finished
reporting how the politicians work with this issue. I hope Johan Sjolander, Chairman of the Board of
Para-transit Services will now tell us about his work.
Johan Sjolander –
Para-transit Services
My name is Johan
Sjolander, Chairman of the Para-transit Service and I am a politician.
Para-transit Service is public transport for people with disabilities or
impairments who are unable to use ordinary forms of public transport. It is natural that we should be involved in
this issue however one has to remember Para-transit Service is never the first
alternative. If it is possible for SL
(Stockholm’s' Public Transport provider) to be used, it has to be considered
the better alternative. The most
important thing is to make public transport accessible to
electro-hypersensitives. But even then
not everyone will be able to use it and the Para-transit Service will be an
important complement.
We have examined two areas
of further questions concerning electro-hypersensitivity.
The first: Is it possible
(for electro-hypersensitives) to access Para-transit Services? How will they do this?
The second is: If an
electro-hypersensitive person orders Paratransit Service, how will the vehicle
operate?
I quite willingly admit
that I cannot give you an answer to these questions.
We are not yet finished
but we have started to address these questions.
Right now there is work being done to put together the answers from a
questionnaire. The Para-transit Service
and The Association for Electrosensitives (FEB) are asking their members how
they feel. I cannot present the answers
yet, which is a pity, it would have been good, but I can give you the
statistics of the answers; about half of them have responded.
There are two questions:
How will
electro-hypersensitives be able to access para-transit services?
If they are able to access
it, will they be able to use it?
We will also examine what
the vehicles will look like. Is it
possible to make taxis and buses accessible?
What will they look like? This is
where we stand.
We now need to discuss
with the concerned parties, collect information and modify the vehicles. I think this was the answer to that question
I got. Thank you!
Lars
Rostlund Electro-sanitization and
Room Modifications
My name is Lars Rostlund
and I perform electro-sanitizations. I
myself became electro-hypersensitive between 1995 and 1999. Two weeks ago, I measured microwaves in the
executive manager’s room of the adjacent building. On the building opposite there is a mast
directed straight towards the room.
Within a week we will put up special curtains and foil the windows to
lessen the radiation. There is also a
block of apartments exposed to the radiation but these people are not
protected. There is constantly an
increasing number of products causing radiation.
This slide illustrates
this activity.
Electromagnetic fields can
be divided into three groups:
The most severe group is
Magnetic Fields, which are usually caused by "stray currents" from
transformers, electrical equipment and the like.
The second group, the
Electric Fields can easily be removed using shielded cables or grounded wall
sockets.
Magnetic fields pass right
through metal so they behave quite differently.
All this is limited to
low-frequency, commonly referred to as alternating current (AC), as in wall
sockets.
There is also direct
current (DC) which exists naturally on earth and we do not measure it in
frequency. DC has its own magnetic field
that the compass adjusts to. It is the
same with the electrostatic fields up here.
They are also natural and they are created just by lifting our feet off
the ground. We attract electrons and
these create an electric field that discharges when we touch things.
The fields created by AC
are problematic for electro-hypersensitives and there is also a risk of cancer.
Today there is no reason
to keep using AC. When we first used
electricity it was DC. Today, technical knowledge of DC has surpassed AC. Now it is expensive and wasteful of resources
to use AC. It is also difficult to make
use of this AC energy if for example one has as a house with solar energy. The last DC in Stockholm disappeared in the
1970s. Today it would be much more
effective and healthy.
At the bottom of this
slide we can see these microwaves and antennas.
Down here the magnetic fields and the electric field are combined into a
single unit. You multiply the magnetic
field by the electric field and if you avoid one, each can be recreated from
the other. So they are there together in
this "far field" which we measure in Watts per square metre instead
of Amps per metre or Volts per metre.
This is the most commonly used unit for microwaves. Microwaves are reflected by metal. Electric fields and charge pass through and
are connected to the earth and therefore behave differently. Different techniques are required to remove
the fields that cause problems. An
electro-hypersensitive person could be sensitive in different parts of the body
or all over. In the same way, reactions
differs from one person to another.
What we are specifying as
microwaves are radio waves moving around with the speed of light with a
wavelength of shorter than 1 metre. That
is the old definition. The new
definition is on a higher frequency. The
electric and magnetic fields combine into a single electromagnetic field soon
after they leave the antenna. When we
talk on a mobile phone the antenna transmits electromagnetic rays in all
directions at the same time.
This slide illustrates the
curtains incorporating the woven wire by which the microwaves are
reflected. This slide illustrates how
the microwaves react. They easily follow the wire in a normal hands-free headset. The wire inside is a better conductor than
the air but with an "air-tube-hands-free kit" the microwaves stop
before the ear. Next to the microphone, there is a small speaker that delivers
the sound to the ear via an air tube.
This makes it more difficult for the microwaves to force their way into
the head. This is a simple, good and
effective aid. The worst hands-free headsets
are the stereo ones as they allow the waves to go straight into both ears. Even if this gives a 50% reduction, this is
nearly as bad as holding the phone against the head. With an ordinary (wired) hands-free kit for
one ear only, it is important to hold the wire close to the body so that the
body absorbs the microwave radiation before it gets to the head. If you hold the wire straight out from the
body you may get a 60% reduction but if you hold the wire close to the body you
can reach up to a 90% reduction.
We have cooperated with
some dressmakers who make protective clothing. This slide shows a professional
electrical worker working with transmitters.
Electro-hypersensitives also use protective clothing. These clothes should be available at "Aid
Centres". The material is the same
as I mentioned before and it reflects microwaves. At Aid Centres there are no protective aids
at all for electro-hypersensitive people.
Here is another necessary
aid, a shielding canopy and a shielding carpet under the bed. The canopy becomes a shield as the metal
reflects the microwaves and inside it there is little radiation. This shows how to shield with screening
paint. The black colour reflects
[absorbs] the microwaves. This slide
shows the antenna on the building opposite and you can see the effect of the
shielding. If one uses Watts per square
metre, the screening creates 40 times lower radiation. If we only use a copper net or window foil,
it is not enough. The radio waves behave
like they do in hands-free kits, they follow the cables coming into the
room. To achieve a reduction of 40 times
one has to shield each individual cable that comes into the room.
This slide shows a
photograph of the room where my son sleeps.
800 metres away, outside the window there is an antenna with its
radiation going straight into the room so we shielded it as a preventative
measure. He is 10 years old and not
electro-hypersensitive but should not sleep in this radiation anyway.
This slide shows how we
connected this black paint to earth.
So what measures can be
taken? These materials; the paints and
wallpapers are all shielding. Distance
to the object is also good protection against magnetic fields.
There are different
organisations that fight against "Electrosmog". The Environment Party and the Communist Party
are good at fighting this as well as an organisation called Folkets Vilja (The Will of the People) and Vagbrytarna
(Wave Breakers).
To sum this
up; Electric fields are easy to remove with a thin sheet of metal. Magnetic fields permeate the whole of our
planet and are always around us. With
TCO-labelled screens we often find magnetic fields with opposing directions
which neutralises the effect. If you
need to shield from microwaves to a higher degree, then shields have to be very
tight or microwaves will still get into a shielded room.
Here are some
numbers. These figures are not valid for
all electro-hypersensitives but maybe a 90%.
We have the TCO limits for display terminals at 0.2 microTesla and 25
nanoTesla for the high frequency [HF] band.
TCO applies these to the line and the frame frequency fields though
electro-hypersensitives can react to electric and magnetic fields at levels 10
times lower. TCO lacks a safety level
for microwaves. It has an
"Efficiency Norm" called TCP and it tells you how effectively a
device broadcasts the microwaves instead of heating up the head. Electro-hypersensitive people have different
sensitivity depending upon how the microwaves are modulated or pulsed. NMT (AM?) and FM radio are not so severe and
far fewer people are affected by them.
GSM and VELOM (DECT?) come second whereas wireless (WiFi/WLAN?) and 3G
create most reactions.
I know a woman
in Nylan who has chosen to step forward and tell her story. She has cervical cancer and is having an
operation in two weeks time. If you
would like to contact her you are welcome to phone her. She has a tumour in her uterus. The hospital is located about 100 km from her
house and is not at all interested in making any electro-sanitizing changes to
help Ann-Christine. They told her to go
to Umea Hospital if she needs an electro-sanitized room. That is 200 km away. Ann-Christine has fairly good health but
extremely low blood pressure. In her
house the microwaves are low and she feels okay. When she goes to the hospital in Solltea she
becomes ill more or less instantly. She
becomes tired, gets dizzy and feels like she has a fever and shivers. The microwaves are 4000 times higher than in
her house. One of the major reasons is
the wireless network. If the hospital
would shield the room with a net it would lessen the radiation up to 40
times. If one could bring down the level
to 12 micro Watts per square metre it would still not be enough. Radiation would still force its way in via
the cables. A canopy would lessen the
radiation 2000 times and it would end up around 0.2 micro Watts. This is the level in her own house. But the hospital did not want to buy a
canopy. So there has been a fundraising
amongst a group of electro-hypersensitives and now she can buy a canopy.
What
adjustments could be made at the hospital?
Everyone should get the treatment they need. There should not be transmitters and masts
directed at the hospital, WLAN, WiFi or DECT cordless phones and base stations
inside the hospital. One should check if
there are low magnetic fields at the entrance and inside the patients'
rooms. Magnetic fields are the most
difficult ones to change afterwards. It is sometimes possible to move an antenna
but transformers and electrical distribution equipment may be more
difficult. It is also good to shield the
whole room enabling patients to go to the bathroom outside the canopy. To shield a room, one uses shielded cables,
wall sockets, light switches and lamps.
All fluorescent lamps have to be changed to incandescent light
bulbs.
Ann-Christine
decided to postpone her operation to be able to turn off as many lights as
possible. She has to travel to the
hospital, take the elevator and walk through a long corridor to reach her
room. This is quite difficult for
her. It is necessary to use a canopy or
to make the room "ROS" protected. I make ROS-protected rooms to reduce the microwaves. ROS-protection is usually used in boardrooms
to make it impossible for signals to leak out but of course it works the other
way around too. To make such a room one
has to put a filter between the paint or wallpaper and the cables. Mind you, it is also important for the staff
to respect the patient and not bring transmitters into the room.
Now there are 5 minutes
left. Any questions?
What kind of
metal is there in the shields?
All metal has the same
effect. In this case we used coated copper covered with silver. There are materials that can be connected to
earth but not this one. We isolate the
threads with seven layers of paint which protects it from damage.
In India they
use material with metal in it which is much cheaper than it is here. Can you use it instead?
They are
probably not woven as a tight net. It
has to be very small stitches. If you look at a Venetian blind it does not give
any protection at all.
How small are
the stitches?
Less than 1
mm.
Why did the
manager want to shield their room?
Health
reasons. Not because they needed to
secure information.
We heard
earlier today that the electro sensitive people have to be met with
respect. That implies that there are
groups who do not need to be met with respect.
Those living in the house next to the manager have not been respected as
they have neither the knowledge nor the funds to protect themselves in this
way. A strong person, like the patient
you mention, should take this up with the Disability Ombudsman.
This is the
question: should electro-hypersensitives have access to support or not? The
disability law clearly states they have the right to help. It is not a question of different levels.
(Next Question)
I would like to
talk to my hospital about electro-sanitizing.
How can I contact you?
Well, I could
turn around so you can read! www.elsanera.nu
Thank you
Sonja
Akerberg - Swedish Association of Electro Sensitives (FEB)
I am
representing the county association. I
will start by representing the association and then tell you about three
electro-hypersensitive people. And then
tell you how they have solved the problems the symptoms have created in their
lives.
In the beginning
of 2005 my regional association counted 614 members in three local
subgroups. The association is
represented in HSO which is the union for disability questions. We also have a newspaper called Stockholm's
Glimpten. Members of the board have also
participated in the Swedish Radiation and Protection Authorities project called
"Transparency Forum" handling mobile phone issues. The association has participated in seminars
and an education programme organised by the association working with discrimination
issues together with an adult education association. We arranged study circles within the subject;
"How to develop equal access to society for electro-hypersensitive
people". These are some of the
things that have been happening during 2005.
Now I will
tell you what happened at my work when I became electro-hypersensitive 12 years
ago. I worked as a biomedical analyst at
the Karolinska Institute Hospital. My
electro sensitivity developed over some months.
I used a computer with a high radiation cathode ray tube screen
(CRT). It started with skin problems and
later I also got other symptoms. I began
to react to fluorescent light, mobile phones, TV, the vacuum cleaner and some
other items. I was then sick-listed for
some weeks and received a lot of help from the former safety engineer. He had my workplace electro-sanitized,
however this was not enough. I had to
make changes in my house and in my summer cottage too. When I came back to work, I had a room of my
own and could adjust the environment to fit my needs. The fluorescent light in the room has been
covered with a metal net and is connected to earth. The light on the table is shielded with a
filter and now has shielded wire. LOCUM
changed the fluorescent light to another type and I swapped the telephone to an
older type. They also changed the CRT
screen next door as it turned out to be a problem. After that I did not work with computers for
four years but then I had to start using them again. I applied for financial support from the
Swedish Swedish Social Insurance Agency.
They granted the request and today I have a computer with an LCD screen
that is modified and the electromagnetic field is eliminated. It uses DC instead of AC and has now worked
okay for 12 years. Nowadays I live a
fairly normal life even though I am sensitive to CRTs. I usually try to avoid fluorescent light,
halogen lamps or low energy bulbs for long periods. I do not use mobile or cordless phones and I
rarely watch TV. If I do, I must be far
away from the screen.
The second
case is a woman who is much more affected than me. She is a trained economist and used to work
at an IT company. She worked in a very
electro-intensive environment with lots of computers. Everyone had mobile phones and the company
had a wireless network. She had to stop
working altogether but she has managed to solve her housing situation. As the neighbours' electronic gadgets made
her ill, she moved from her detached house to a stone one. She bought a soapstone stove to reduce the need
for electric heating. The fridge and the
other appliances are placed in a small building outside. When the washing machine and dishwasher are
in use she leaves the house for a walk.
It is possible for her to use public transport but there are too many
mobile phones in use at peak hours. At
most times she uses her own car. She
managed to find a dentist with electro-sanitized facilities but it is very
difficult to go to any healthcare centre due to low energy bulbs and computers.
The third
person is severely electro-hypersensitive.
He is educated in electrical-engineering and was a manager at Ericsson
when he became ill. The triggering
factor was the computer screen. He
cannot work any longer and had to move from town. Now his house is heated with wood and the
cooking is done on a wood stove. In the
summer he cooks outside on a camping stove.
He uses candles for light he has only one lightbulb of 15 Watts in the
house. He has a washing machine and a
water heater but he takes a walk when they are in use. The fridge and freezer are in another
house. He cannot use TV but he has a
battery radio. Groceries are delivered
once a week and clothes are bought by mail-order. It is impossible for him to visit a
healthcare centre or a dentist. During the
last seven years he has had two home visits from doctors. They have been planned but what would happen
if there were acute problems?
To summarise,
we can say there are different levels of sensitivity and unique reactions. There are also time factors that are
important. It is possible to cope with
an electro-hypersensitive environment during a short time, not for long. This of course depends on the level of
severity. For some people it is not
possible at all. One could very quickly
end up with increased sensitivity, perhaps after less than a day. It can take a very long time for
recovery. Our major problem is the
housing situation but also dentists, hospitals, opticians and the lack of
electro-sanitized homes for the elderly.
This is very important.
Riitta-Leena
Karlsson - Disability Ombudsman for the Municipality of Stockholm.
In my work I
answer directly to the board of the local authority. My role is to be responsible for disability
questions within the 18 districts of the municipality, the professional
committees and the municipal companies.
I help with the local administration.
I know quite a bit about disabilities but I cannot become an expert. To learn more about the problems, the
disability organisations are an important source of information. My task today is to summarise and reflect on
what we have heard. A great task, one I
do with pleasure. It is nice to be part of
a local government that, in relation to others, is making progress. It might come down to the fact that we in this
big city live in a very electro-intense environment.
Regarding
other disabilities, there are many other local governments who are progressive
and carrying out changes and we are the slow ones. Big cities are a bit like a big ship - it
takes time to change direction. When it
comes to electro-hypersensitivity, I recently read this book. Johan showed the (political action plan for
disabilities) in Sweden earlier. A
couple of weeks ago, a follow-up to that one appeared. I will talk about two parts of that.
The National
Action Plan is directed to the 14 regional authorities in Sweden whose task it
is to lead the way in making Sweden more accessible for impaired people. The National Board of Housing, Building and
Planning is one. The National Post and
Telecom Agency is another.
So what do
they say in this follow-up?
The Board for
Housing and Planning says:
"A
good indoor environment is very important for people who are allergic or very
sensitive. It is therefore of great
importance that the measures taken for energy-saving purposes do not result in
worse indoor environments."
This is what
they say.
We need to put
some substance behind "energy measures". What do they mean by that? Then they proceed to write about houses and
noise in the environment etc.
Then comes an
addition "Accessibility for the disabled is rarely mentioned in the
descriptions and consequences of environmental impacts and is an area to be
developed"
This is worth
thinking about.
The National
Post and Telecom Agency focuses on new technical possibilities like access to
computers and broadband.
This does not
apply to electro sensitive people but in "Access to a forum for dialogue
with the users" it says:
"There
is a need for yet another forum to have an ongoing discussion with
distributors, operators scientists and the user and user organisations."
There is
another passage where they point out the lack of clarity regarding accessibility. It is described as "design for all"
and implicitly guarantees access for everyone to all products used by the
general public and all services within the sector including TV and digital TV. This is something vital for the future:
design for all. This includes all
technical devices at home. To include
understanding of electro sensitivity in the "design for all" is
important for the future. Johan thought
I should mention the city's political programme for disabilities. I did not intend to, but having heard this, I
went back to my room to collect some information. I also checked how we covered the issue of
electro-hypersensitivity in our action plan.
The Action Plan is a product in which one sets goals to direct the
political work on disability questions.
It is written with the UN Standard Rules and the National Action Plan in
mind. The end result is the municipality
of Stockholm's own Action Plan for Disability Goals Ending 2010.
When this was
written, we avoided talking about specific groups. We thought the principle "no one
mentioned, no one forgotten" is the best one. Otherwise there is a risk that the city might
say "This group is not mentioned".
Still, I have noticed that in the paragraph regarding accessibility, it
states "in broad perspective" and by that they definitely intend more
than just modifications to doors and toilets.
It encompasses communication, participation and accessibility to public
premises. In the paragraph
"clarifying questions", it is written that it is the responsibility
of authorities to make sure that public meetings are held in premises designed
for people with disabilities. We
mentioned the work of the disability committees. We have 32 of them, which is a world
record. One of them is directly under the
local government and consists of politicians and representatives. The other 31 contain representatives from
disability organisations. There are
around 40 organisations to compete for the seats however it is not always a
competition. Sometimes it is even
difficult to recruit people. On some of
the committees electro sensitive people are represented. Influence from the users is an important
stepping-stone for politicians to see what needs to be done. Users are the best source of knowledge except
currently there is a lack of young people.
Children are represented by their parents but we need more young people
in order to have complete coverage in committees.
Which issues
do I come into contact with a work? It
is also my duty to give advice and guidance.
People can contact me freely -
but maybe I should have one of those T-shirts you have. It was cool.
Perhaps I'll have to pump up my muscles a bit as my e-mail address is
very long.
So what do
people want to talk about? Well first of all I am struck by the similarity
between electro-hypersensitive people's situation today and that of other
disability groups in earlier years. If
we rewind the tape we have had impaired people who have had to move straight to
a nursing home. The parents were told that
this baby was not worth wasting time on.
They should get another one instead.
At the beginning of the 1950s this was far too common. I have even met parents who had to escape
from the hospital with their baby so they could keep it. We have also had a recent discussion about
people with neuropsychiatric impairments.
People spoke, more or less ironically, about "letter
diagnosis". Are they necessary or
not? Does everyone have to find "a
letter" to label oneself with?
Following that discussion there is today a greater interest in
neuropsychiatric diagnoses. If it is of
no interest to get a diagnosis, maybe that should apply to cancer and other
illnesses where there is a cure or relief today. This is the same regarding neuropsychiatric
impairments. We have an ongoing project
in which the County Council and local government have come together to share
knowledge about these diagnoses. We have
met at Nalen several times and the room has been packed with people. There will surely come a time when electro
sensitive people will receive this kind of recognition.
The phone
calls I received from electro sensitive people come most of the time from the
IT sector. The callers used to use
mobile and wireless phones a lot. For
comfort, I could add that they are usually met with understanding by their
employers. The employers have seen them
as capable people who would not make this kind of thing up. They have adjusted the work environment and
the people could keep on working. But
when they call me they often want to discuss problems with the environment at
home. It is amazing, but also typical
for our time, that they do not know how to describe their problems. They are afraid of my reaction to the problem
and do not know how to start telling me or other people about the problems as
they think people will consider them mentally ill. This indicates how we label people with
psychiatric disorders even though they are equally important. Regardless of
what kind of disability one has, it is also possible to have a psychiatric
disorder. On the other hand, it does not
imply that if one is electro-hypersensitive one can have have a diagnosis. This is something that a lot of people feel
the need to explain. They say: "I
have no delusions, angst or obsessions." They are so used to having their
sanity questioned. With this, I would
like to underline that the problem today is attitudes towards
electro-hypersensitives. I know that
the municipality of Stockholm and Stockholm County Council has extensive
cooperation with SL, the Para-transit Service and the user organisations within
the "Accessible-Project". In
this forum the issue of electro-hypersensitivity has been discussed. There is hope for the future if we start to
listen to people individually and not bundle them together.
There is also
a success factor connected to electro-hypersensitivity. Electro-hypersensitivity can affect people
regardless of political persuasion, education or income. It seems to affect many people in specific
occupations. In the future we will
probably meet more politicians and executive managers who themselves have
direct experience of electro hypersensitivity which could mean a better
understanding of the problem. Then we
might come one step closer to some practical solutions. There are new diagnosis and disability
definitions coming all the time.
Electro-hypersensitivity is not the last one but one in the line of
others. We need more understanding and empathy
regarding this disability until we make practical and substantial decisions, at
which time it will be fully included in our policies so that Sweden will be
accessible for everyone.
Thank you!
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