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FOR AN
OPTIMAL RELATIONSHIP WITH DISABILITY
PAGE
INDEX
PRACTICAL
SUGGESTIONS
PREMISE
What follows tries to deal with
the two-sided problem of relating to disability:
i) the relationship between
'able bodied' people and their experience of people with disabilities
and
ii) the relationship between a disabled person and his
or her disability.
The term disability, is
sometimes substituted by differently able, indicating
a progressive trend in developing descriptive terms. In discussing
"relating to disability" we are talking about the
quest to overcome an image of disability which is described
in restrictive and belittling terms, and instead seeking to
emphasise 'different abilities'. This becomes complicated,
however, if in this search we forget about the disability
itself, making it seem banal and meaningless.
THE RELATIONSHIP
BETWEEN THE DISABLED PERSON AND DISABILITY
Anyone who lives with an impairment is forced to consider
their life in terms which are different to those who are not
disabled. But the difference does not consist of denying equal
aspirations and equal needs; difference consists of the search
for an original path - as if any task has to be achieved using
a different 'route'. For example if the 'path' between one's
hand and an object is immediate, for someone with a particular
impairment, that action might involve alternative 'paths'
using a different 'organization' of thinking. This way of
performing an action can differ from the methods that are
normally 'passed on' from those we live with, or the society
we live in. In other words a person with a disability may
need to adopt a new system of thinking in order to carry out
everyday tasks and fulfill their daily objectives. This new
system of thinking may also require the use of aids which
help accomplish tasks, just as able-bodied people use aids
of one kind or another to help them in their daily life: for
example a diary to help organize deadlines and meetings.
This restructuring of information which the
person with a disability uses is a new form of learning, different
from academic learning. It can also occur in an academic context,
but not always. This learning process will obviously become
re-education when the impairment is sudden or is of traumatic
origin perhaps resulting from a domestic accident, a car accident,
or an accident in the workplace. Disabilities resulting from
from this type of sudden impairment have a different impact
on someone compared to disabilities which have been experienced
by someone since birth.
There might be difficulties in accepting the
situation, especially when someone is impaired by a traumatic
accident - they might treat the impairment as a 'passing phase,'
refusing to accept its permanent character and hence not make
an effort to reorganize their life taking into account the
long term. When faced with a sudden, disabling condition,
the individual will very likely experience feelings of desperation
and may make excessive requests for help. This can also happen
to people who have had an impairment since birth and have
become accustomed to an over-protective form of assistance
in resolving their problems and satisfying their needs.
Sometimes this can lead individuals to think
of themselves as a victim. Whilst impairment cannot be denied
and is hard to live with, some people avoid confronting their
condition and tend to rely excessively on others in situations
which they could actually deal with themselves. This is certainly
not always the case, but nevertheless there are cases in which
individuals relish the assistance of others as some sort of
compensation for what has happened to them.
This state of mind however, is caused by our
society which displays numerous forms of indirect discrimination
which can cause a disabled person to retreat and fail to confront
their own disability. Direct or indirect discrimination is
a form of violence and a disabled person would have every
right to feel like a victim. Confronting their disability
and learning to relate to it can expose them to further discrimination.
However it can also be the only chance to achieve full citizenship
and the right to live fully within society.
The person with disabilities does not have
an easy life: they have a lot of learning to do and also learn
not to 'rely' too much on one's disability. They will have
to learn to be aware of their needs without letting them overtake
too much of their life.
THE LOSS OF
INDEPENDENCE
Independence is often understood as the ability
to do things. We believe it should actually be the ability
to organize things. This is why we believe that a person with
disabilities will become an independent adult only when the
keys to organizing their life are given to him, so that they
can coordinate their needs and the assistance they receive:
even without being able to perform a specific action they
can decide how an assistant might perform it for them without
it becoming a burden. We have many examples of people with
disabilities that have the ability to ask for assistance in
such a way that the giver also receives, i.e. those who offer
help also earn something from it.
There are situations where independence needs
organization. If the organization is provided by the same
kind of assistance, from the same people or institutions then
the dependence is perpetuated. Therefore it is very important
to enlarge the circle of those who give help and enlarge it
on a social scale where all are involved. We must encourage
the building of a social network enabling independence to
develop with more assistance coming from a living environment.
PEOPLE'S CURIOSITY
The relationship between disabled and non disabled people
can sometimes be characterised by an invading curiosity towards
aspects of privacy which are the right of everyone. For example
if a disabled man or woman needs to use a communication aid,
they may be obliged to continuously show the aid to everyone
present, rather than being able to show it only to those who
they choose to communicate with. The exhibition of curiosity
is something towards which we wish to call attention.
NO TO COMPASSION
To be an object of compassion from others
is a reciprocal loss of dignity. Assuming an attitude of pity
towards a disabled person is in effect thinking of them as
'poor things' and can render the status of that person as
inferior or subordinated. It either triggers anger and rebellion
or an unhealthy relationship. Finding understanding sometimes
involves asking questions repeatedly until all needs and feelings
are clear. Often what happens instead is that people refrain
from asking questions, pretending to understand what it's
actually not understood: this imposes a serious limit to empathy
which can also be damaging. An attitude of compassion makes
the disabled person marginal, making them feel as if they
are beggars in a world of 'rich' able bodied.
THE ABILITY TO HELP
To help is important, to enable others to
help themselves is more important. It is very important to
try to establish reciprocity in the help that is given, in
order to avoid victimisation. If a person with impairment
needs help, we need to ask first if they actually would like
some help from us. If they do, we should not make a show of
it, but try to be as reserved as possible, without exhibiting
clamour that can irritate the person on the receiving end.
Excessive familiarity suggests a close relationship that does
not exist. Often what happens is that being a civil person
is substituted in the mind of the 'able bodied' as an opportunity
to become a hero. This is not what the person with a disability
wants and it is not useful in building a relationship equal
to both parties.
THE INVISIBLE
IMPAIRMENT
Sometimes we have to deal with people that have difficulties
and who are not immediately recognised as disabled: this can
often cause a brusque response, impatient and inadequate replies
- maybe we have not realise that the person we are liaising
with is deaf or partially sighted, and so on. When we eventually
realise that the person has a disability, we feel guilty and
this can complicate things further. What can we do? Perhaps
talk in total frankness about what happened and apologise:
this might help lighten up a tension that is probably reciprocal.
It is not always possible for someone with a non-visible impairment
to attract attention to it and constantly send out warnings.
If a situations like this arises it is definitely a lot easier
to speak up, talk about what happened and while apologising,
find effective ways to make it better.
RULES FOR
CIVIL LIVING
There are not that many rules but some of
them are fundamental: let's try and remember!
In the car:
We need to respect the
sign indicating a parking space for people with disabilities
and not park in that designed space. Even if there is not
a 'disabled person' in sight: we cannot guarantee it and it
is simply a civil, normal code to respect. Rights for people
with disabilities are the norm, not the exception and it doesn't
take much to understand that in violating a parking space
rule we are not being civil and are potentially cutting off
a disabled person from social life.
We must remember that:
Walkways are not just for agile people that
can jump over obstacles or get around them: others might not
be so agile but would still have a right to walk in the area
designated for walking.
A blind person or a wheelchair user need not feel as if they
are about to cross a minefield everytime they go out. Obstructions
imposed by badly
parked cars can
be a huge problem caused simply by carelessness.
Wheelchair access passages:
Not many buildings are wheelchair accessible anyway, but the
few that are often have passages designated for access that
are crammed with bicycles, mopeds and the likes. This is also
carelessness.
These little rules of civil living are completely
overlooked in our country and we have a sad record for the
non-observance of these non-extraordinary rules.
THE GOOD PRACTICES
Now part of common use of european
languages, the expression 'Good Practices' indicates all the
necessary actions to transform cultural, social institutional
organizations so that they take into account a comprehensive
reality. It would seem obvious that this should interest all
those who build these organizations so that they pay attention
to all that is included or excluded in the concept of normality:
however, often it isn't so.
For example, people who organize
and manage transport, postal and banking services, libraries
and university hallrooms have in mind a certain 'standard'
- an idea of the average person who will use these services
and who is 'normal'. In reality, potential users will be hugely
differentiated, and among these, disability certainly encompasses
many people, regardless of other differences.
Therefore, adopting 'Good Practices'
stands for making an effort into getting to know reality better
in order to plan structures for public use that are more useful
and functional for every body.
Train
stations can be an example:
Many times we have observed,
with the contribution of people with disabilities, that train
station personnel have a good predisposition towards access
needs for disabled people and are capable of resolving difficult
situations. This is because the personnel concerned have been
trained to deal with similar situations and this training
is part of a comprehensive organizational model that, although
not present in every train station, has been built with the
idea of providing alternative access routes to all.
Disabled travelers often need
to book their tickets in advance and be clear about their
access needs: this benefits not only for them but also other
people who might have an access need, such as an elderly person,
a pregnant woman or a someone with children... a train station
cannot be modified at once with a magic wand but whenever
there will be a need for renovation, these 'good practices'
can be taken into account.
Recognising the complexity of
reality is a good starting point for 'good practices'. Unfortunately
the problems are urgent and even though there are possible
solutions, often they take a long time to take place, meanwhile
people with disabilities have access needs NOW. Hopefully
people with disabilities will be more and more involved in
this changing process that involves everyone and that is in
effect, a cultural change. It is important to adopt 'good
practices' as the foundation of cultural and social life,
so that everyone is included and individuality can stem equally
from each person. Individuality will only flourish provided
everyone is given the same opportunities in getting a job,
getting an education, getting a home, setting up a family
and having a social life.
PRACTICAL
SUGGESTIONS
Physical impairments
are of different nature to sensory or learning disabilities.
Often obvious disabilities seems to have a greater impact
than hidden disabilities. However, often it is easier to adapt
to an obvious disability than it is to cope with a hidden
disability as often it is not recognised and is not taken
into account, such as deafness, partial or total, and blindness,
partial or total.
The links below
lead to information taken from a special education document
put together by a Swiss team of special educators. These are
suggestions that might be useful in dealing with the following:
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