Independent Living Institute www.independentliving.org


 

The Disabled point of view

by Yasmin Jungestedt, 2002-09

There should always be an alternative! Everyone should have the same opportunities and rights. Whether you are disabled or not, you should be able to live an independent, rich, rewarding life, and this is most certainly not always the case. There are a number of measures of paramount importance that society ought to take. I'll outline a few of them below.


Financing

Some people argue that a completely accessible society would make any special services for persons with disabilities unnecessary. All would have equal opportunities, earn a living and support themselves. This is an interesting thought but not the reality. People with my extensive personal assistance needs, for example, cannot reasonably be expected to earn enough to pay for their services. But the argument suggests a relationship between the way society is designed and our needs of support services.

I'd like to begin with an absolutely vital question, namely financing. To rely on government financing is haphazard at best, since state treasury is vulnerable to economical fluctuations and thus reliable only in times of prosperity. In periods of economical depression, cut backs are frequently made in areas affecting minorities such as the disabled.

My proposition for financing necessary measures for the disabled is therefore to enforce such measures through legislative means. It should be unequivocally stated in legislation that any and all enterprises catering to the public are to provide free access for disabled people on pain of heavy fines. This would ensure that financing was automatically included in any and all budgets for any and all public enterprises, such as restaurants, cinemas, libraries, transportation, swimming baths, museums, old monuments, and so forth. The responsibility of financing would lie with the entrepreneurs or the public authorities providing the services in question.

Measures

In the following I give some examples of vital areas in society where accessibility for the disabled are of the utmost importance. This list of examples is comprehensive but not exhaustive; the number of areas in society where I have suggestions for necessary improvements would make far too long a list for this essay.

Here, though, are some of my thoughts on these matters:

Buses, trains and the underground should be totally accessible for persons with any kind of disability, and special attention must be directed towards making room not only for prams but for wheel chairs as well. Also, buses must be built to be accessible from street level, without any steps. While visiting Rome in Italy recently, I had occasion to notice that most buses where built so that they could be lowered down to kerb level, whereupon an automatic ramp glided out from under the bus. It amazes me that this is not legislatively the case in all of Europe!

On trains, naturally, there must be extra large compartments with plenty of room and special toilets for the disabled. Also, ramps are especially important on trains, since the steps on a train car are invariably high and very steep, and thus well neigh inaccessible for a person in wheel chair.

On aeroplanes, disabled people should be allowed to buy first class tickets at the price of business class tickets - since the seats are wider in first class, making them possible to use for a paralyzed person with a modicum of comfort - and there should of course be adequate rest room facilities. Also, the stewards and stewardesses should have some kind of at least elementary training in helping disabled people to move from their wheel chair to their seat, and so forth. There might be disabled people traveling without personal assistants, and even when accompanied by personal assistants disabled people run extra risks in confined spaces such as aeroplane cabins and might thus be in need of extra help.

When it comes to transportation, it is often practically unfeasible for somebody in wheel chair to take a taxi or use public transport. Thus there should also be a special taxi transportation service for disabled persons only, with cars easily accessible with wheel chair. There is such a service in Sweden, but unfortunately it is quite ineffective - it sometimes takes the taxi hours to arrive, and you always run the risk of being late to wherever you are going, since there are not enough cabs and you are thus often forced to share a cab with someone else.

This is of course somewhat of a special case when it comes to financing, since such a specialized taxi company might need subsidies from the government. On the other hand, one could also envision a company small enough to be able to make a profit on its disabled customers.

Electric wheel chairs are very sensitive to kerbs or other similar obstacles of a height surpassing a couple of inches. Everywhere where there are obstacles of this kind, the maximum height should be a couple of inches and otherwise the government should guarantee ramps and other facilities making it possible for handicapped people to partake of daily life as any other citizen.

In the same manner, counters in pubs and stores could be a bit lower, to accommodate somebody who is actually forced to sit down all day. Also, there should always be an alternative to stairs, not to mention automatic doors everywhere; every single facility and establishment in society should be accessible to anyone, with any kind of disability.

At least in Europe sidewalks are often bumpy and uneven, and thus disabled people in wheel chairs often choose to use the bicycle paths that are occasionally in evidence. Not only are they few and far between, but also risky to use since collisions with fast moving cyclists are not always avoidable. My suggestion would be to add an extra strip of narrow, even asphalt parallel to each sidewalk in a city. This would not infringe perceptibly on the space given to drivers or pedestrians, but be an invaluable help for the disabled.

I would also like to see specialized driving schools, with personnel well educated in this field and thus among other things able to teach somewhat tailored ways to drive and even furnish the cars with the equipment necessary for each individual. And in fact, when it comes to quite ordinary forms of disability, such as being confined to a wheel chair, it would hardly be to much to ask the car manufacturers to provide standardized equipment necessary for such persons to be able to drive the car. This equipment should, of course, be sold at a profit by the manufacturers, but considering the number of people in need of such extra equipment this should be wholly feasible.

I would like to enforce legislation whereby any estate owner, be it governmental housing projects or private companies, are forced to provide a certain amount of apartments specially adapted for disabled people. They should also have to let these apartments to disabled people and no others, since a disabled person without his or her own apartment is virtually reduced to living in institutions or hospitals. We can not compete on equal terms on the housing market, for the very simple reason that we need special apartments adapted to our various special needs.

Also, the government should legislate against discrimination of disabled people on the labour market. Very often, disabled people are disfavoured for the simple reason that they are disabled, even though they are perfectly capable of doing the same job as other applicants - with or without their personal assistant(s). To let disabled people in on the labour market would also, in the long run, ensure a change of attitude towards the disabled, since visibility is always a sure way of finally more or less eliminating fear and prejudice among the general public.

In Sweden it is often the case that disabled people finally choose to live on the meagre benefits accorded them by the government, since the hopelessness of competing on the labour market - even though they are highly skilled in their chosen profession - is often so devastating to self image and confidence that they simply give up.

In every large city in every country there should be specialized clinics for disabled people - at least one clinic for every major disability, where there are doctors, almoners and nurses trained to treat and rehabilitate people with the disability in question, and where there is opportunity for physical therapy together with people with the same possibilities as oneself. One should not have to move in order to get the treatment and rehabilitation that should be guaranteed by law.

The various major groups of disabled people should all have their specialized clinics, since the needs of for example paralyzed people and those with brain damage are not at all the same. Grouping people with various handicaps together in the same clinic can sometimes be more of a hindrance than an advantage.

One other important aspect of this is that specialist knowledge of disabilities is necessary in emergencies; at a common hospital they do not always know how to properly treat an injured, paralyzed persons.

Of major importance is special camps for all sorts of disabled people. There should actually be world wide co-operation arranging such camps, since they provide disabled people with opportunities to come together, discuss and partake in various activities, with others in the same situation as themselves as well as with specialists and instructors of various kinds. Camps are thus invaluable for strengthening disabled people both psychologically and physically. This contact and exchange of experiences is impossible to do without, since above all it provides one with motivation, resolve and further abilities to tackle the disadvantages facing every disabled person in day to day life.

Such camps must actually be very demanding, in order to force even those disabled persons who feel inclined to just give up or who lack the confidence to test their limits, to press on, to try and make the best of their situation. I can safely say, from my own experience, that once you have lived up to these high demands, you are overcome with a sense of both accomplishment and relief that helps you to further improve your quality of life.

Not to be forgotten, though, is the personal friendships and interrelationships formed at such camps, since they provide not only a source of continuous pleasure but also of continuos support and motivation.

This kind of camp is evident in Sweden, although only for those with spinal cord injuries. I would like to see very many more such camps, and for people with various kinds of disabilities.

As for financing, it is largely or wholly possible to finance these camps through a) membership fees in special organizations for the disabled and b) even more importantly, through sponsoring from various companies, who are then allowed to advertise both their charity officially, and their products on the camp as such.

There is also another kind of valuable camp, namely for relatives and friends to persons severely injured and thereafter disabled. One should remember, that it is not only the disabled person whose life has changed forever, but also his or hers relatives' and friends' lives. They usually don't have any experience at all of this kind of tragedy, and are thus in great need of coming to an understanding of what exactly it is that has happened, what their loved and injured one can and can not do, and what they themselves must do to be of the best possible help. It is also, naturally, valuable to meet members of other families in the same situation, just as it is for disabled people to meet and gain strength from each other.

For blind people, there should be audible signals at street crossings - one signal for green light, and one for red. In the same way, street names on the walls of houses should be given in braille, at a level suitable for blind reading.

Cash dispensers should have a twin dispenser at a lower level, making it possible for disabled people in wheel chairs to withdraw money without help. No one particularly wants to involve others in their private economy.

Disabled persons - if anyone! - should be able to book tickets for events via the Internet. On most web pages, however, there is a special phone number you're supposed to call if you want seating in the area for disabled people. This goes for most any kind of public entertainment; cinema, theatre and concerts - and makes it well nigh impossible to partake in these kinds of events without a couple of days planning ahead (not in the least to be able to arrange with transportation, since communal transportation like the underground and buses are often practically inaccessible for the handicapped).

On top of this, the price of the ticket for the personal assistant should be automatically included in the ticket for the disabled person in need of a personal assistant. As it is now, it is possible for the personal assistant to be reimbursed by mailing the used ticket to the proper authorities, but this is a cumbersome affair - and simply unnecessary. It would be easier to just include the price from the beginning.

As for the Paralympics - the Olympic games for disabled people - the screen time offered by Swedish television was a fifteen minute summary each day, as compared to the continuous prime time, live broadcasts from the Olympic Games. This is a telling example of an attitude whereby disabled people are made to feel to be of minor importance, and as such an attitude that has to be opposed through legislation enforcing state owned, national television to give these events equal broadcasting time.

Furthermore, any television show should carry subtitles, making it possible to watch for deaf people as well.

In swimming halls, there should be locker rooms where it is possible to lie down, so that a paralyzed person can change into swimming suit with the aid of his or her personal assistant. In the actual swimming pool, there should be a vertically adjustable chair making it possible for the paralyzed person to get into and out of the water. It is of some importance for people in this condition to be able to visit public baths, since the sensation of floating in huge bodies of water is tantamount to a sense of great freedom - something usually lacking in the everyday experience of a paralyzed person.

Educational and training opportunities for personal assistants today are far more primitive than need be the case. These courses of instruction should be far less general and to a much larger extent aimed at people with specific disabilities, and also there is need for an attitude change as regards the status of this line of work. Already in upper secondary school, students aiming for a medical career should be able to choose programs specializing in the treatment and rehabilitation of the disabled.

Also, one should work for a change of attitude towards this profession and aim at giving it a high profile status. The personal assistant is extremely important for a disabled person's independence and ability to manage everyday life on a more or less self-sufficient basis. The foremost aim should be to give disabled people as large a measure of freedom as possible, and thus the personal assistant provides an invaluable service to a not insignificant but none the less often ignored minority segment of society. This profession should therefore be regarded with respect, since a personal assistant does everything from helping out with everyday chores and needs, and is also often indispensable at the place of work. This means that a personal assistant is everything from hygienist to stylist, from carpenter to physical therapist, to right-hand man or maid-of-all-work.


Appliances

There is one very important area wherein financing can not be accomplished as outlined in the beginning of this essay, namely when it comes to various kinds of tools and appliances necessary to aid a disabled person. Examples of such are obvious: (electric) wheel chairs, special wheel chairs for showers and toilet needs, so called "driving gloves" (aiding somebody in wheel chair to manage the chair by him- or herself), canes for the blind, hearing-aids for the hearing-impaired, catheter plastic bags, computers (applicable and important for all disabled persons, no matter what their disability), remote controls for various kinds of apparatus in the household, special beds, and so forth.

Now, these aids have to be state-financed, since it would be wholly non-viable to have any private organization make them at a profit - for the simple reason that this would exclude any disabled person of only very moderate means. My suggestion would be to legislate this financing in such a way as to make cuts therein absolutely impossible, since all such aids, tools and appliances are of essential and vital importance not only for the quality of life of a disabled person, but for life itself. Other sections of society naturally have a right to be financed as well, but only a handful of those sections can reasonably be seen as equally important. To give an example: if the government is in a given year unable to afford a new highway, this might lead to some inconvenience for motorists but will not be a catastrophe in any way comparable to disabled persons being cut off from the various appliances and tools they need for their day to day existence.

There is a special case when it comes to aids necessary for living a normal life, and what makes it special are various kinds of obsolete but non the less sadly wide-spread prejudices. The case, though, is pretty simple - disabled persons, and most often men, need various kinds of help in order to be able to have even a semblance of a normal sex life. In the case of men quite naturally the stimulant viagra, which costs a fortune but is in most cases absolutely necessary. Viagra should, in the case of disabled persons, be accorded medicinal status, and thus subject to the same prize-regulating laws as other forms of medicine. Provided, of course, that medicinal drugs are accorded special status in a given country's legislation. If not so, however, they should be.


An extra thought

A lot of energy is spent on trying to improve life for the already disabled, but maybe we should also direct some attention to preventive measures. In my own case, I am quadruplegically paralyzed (albeit with ability to move my arms somewhat) due to a diving accident, which in turn - and this has been proven in court - was caused by a total lack of warning signs.

Now, warning signs are a simple but effective measure, and they do come comparatively cheaply.

Also, there should be far more extensive education, in elementary school and on other levels in society, about different kinds of hazardous situations and what preventive actions can and must be taken in all such circumstances.

In this case, those who are already disabled through various kinds of accidents have a responsibility to try and inform others of the gravity of the risks, and to convey an insight into the upheavals of life a tragedy of this magnitude automatically causes.

One way to convey at least a shadow of these upheavals, would be to let a politician be confined to a wheel-chair for a day and try to find his way around town. This would of course not give him or her even an inclination of the difficulties associated with such everyday matters as hygiene and visits to the toilet, but it would give him or her somewhat of an idea of how hard it is for disabled people to use public transports, to negotiate steps and kerbs, and to constantly be faced with the odd looks from a largely prejudiced and uncomprehending public.


Outlook

I would like to end with an outlook on the United States of America, which - as I have had occasion to notice during my visit there - is far advanced in the area of equal opportunity for the disabled. This outlook might serve as an example not only of comparison between my native country of Sweden and the United States of America, but also as an example of what is actually possible to accomplish. This is not to say that there is not a lot to do still in the United States of America, only that they have advanced further upon this road than most other countries in the world.

Visting the United States of America, comparatively paradisiacal for the disabled.

Sweden is far behind the United States when it comes to equal opportunities for disabled people. Far-reaching legislation makes it possible for disabled Americans to move about freely in society, and the attitude towards disabled people is markedly better in the United States. This is something I experienced when I was in Florida, one of the world's most suitable places for disabled people. In contrast to Sweden, flaws in suitability for disabled people are regarded as deviations from the norm - not disabled people themselves. Swedish legislators should be forced to change our laws, taking the United States as an example.

Disabled people in the United States have far greater opportunities to live a dignified life. An interesting example: in May, 1977, the great news spread across the American continent that Barbie, the doll, had gotten a friend in wheel chair, Becky. Unfortunately, there was one small but very annoying mistake: Becky's wheel chair did not fit into the lift in Barbie's house. On top of that, most of the doorways were to narrow.

The Swedish reaction would probably have been something along the lines of "Well, that hardly matters. The children can always put Becky in the house themselves." That, however, was not the case in the United States. The manufacturer, Mattel, was forced to remedy the situation immediately.

And quite naturally so. Otherwise they'd be sued. Such is American legislation for the disabled.

Physically speaking, the United States is without any comparison the world's most suitable country for disabled people. During my visit there, I was duly impressed. This is a society that has changed a great deal for the better since ADA, Americans with Disabilities Act, was ratified on the 26th of July, 1990. ADA is a very far-reaching act aimed at compensating for the differences of opportunity in society, shutting disabled people out from large areas of public life.

The act has not only made life easier on a purely practical level, it has also changed the attitude of society as a whole. It is simply not accepted that some people are left out. In Sweden, however, it is still possible to just shrug and say: "Sorry, there is no entrance with a ramp" or "No, we don't have a menu in braille, but if you wait a moment I'll read it to you" or "No, there is no toilet for disabled people".

In the United States, this is impossible. All sorts of forcible means are employed. This means that not only can a violator of the law always be sued; it also means that any enterprise not run in accordance with the law can lose its subsidies. Institutions in the public sector, for example nearly all universities and schools (although they don't get subsidies anywhere near their Swedish counterparts), must all see to it that disabled people have access to all facilities.

In the United States one does not pitch suitability for the disabled against larger educational capacity or new technology. The rule is immutable: suitability for the disabled first, then subsidies. This is the difference between legal rights and public benevolence.

Today it would be a lot easier for Swedish universities to enforce suitability for the disabled: all that is required is a measure of courage and the ability to take advantage of the fact that ownership of the facilities is no longer tied in with the enterprise.

Quite naturally, one should not sign contracts with and pay rent to Akademiska Hus if the facilities are not accessible for disabled people. Accessibility is the responsibility of Akademiska Hus.

Not only practical availability but also human relations have changed in the United States. Initially one adapted various facilities under protest, simply because it was required by law and because it was too costly not to. Slowly, however, this became something quite natural, something always taken into account - in the same way that one builds stairs and/or installs a lift so that nobody has to climb to the second floor with the aid of ropes or the drainpipes. Restaurants, department stores, large and small shops, amusement parks, tourist attractions, travelling agencies - well, all who furnish the public with products or services - are affected.

A small restaurant on Highway 1, on the slope of a mountain in the middle of nowhere. oh yes, there is a parking lot for disabled people and a ramp at the entrance.

Sea World is totally suitable for the disabled, with the exception of one place where there are stairs to the upper part of the otter aquarium. So what happens? The administration apologizes, and disabled people pay only half the entrance fee. The prevailing attitude is that there is nothing wrong with the person in wheel chair - what is instead regarded as a deviation from the norm is lack of accessibility for disabled people.

According to a recently published report, 25 - 30% of all disabled people in Sweden have at one point or another been discriminated against in their working life. That is a very high number. It's a question both of attitudes and the friction generated by constantly having to survive in an environment suited almost exclusively to persons who are not disabled. If, however, society decides that it is unacceptable to shut some of its citizens out, the prevailing attitude will change. This is very evident in the United States. Nowadays it is rare for someone to be dragged into court in order for them to make their establishments accessible to the disabled. The social stigma following the failure to do so has in itself become a decisive factor.

There is as lot to be gained by compelling legislation.

When I was in the United States, the most important thing for me was the accessibility of various buildings. The feeling of actually having been taken into consideration, of somebody knowing that people like me do exist and of being made to feel welcome, was fantastic.

The advantages of the Swedish system has mainly consisted in me being able to go to the United States with my personal assistants. That is not at all bad; without my personal assistants I would hardly manage. None the less, it's a fact that in every situation where I need help from a personal assistant, I would gladly exchange the assistant for a technical device whereby I could manage by myself - even if it took longer and did not get done equally as well. Everything you don't have to ask for is an inch of freedom won.

It is of very great value to be able to open a door oneself instead of having somebody else open it. It is better to be able to use a cash-dispenser oneself instead of having to ask somebody for help, and so on. This is a legal right in the United States, but not in Sweden. In the United States you also have the right to be spared high kerbs and stairs; sloping kerbs, ramps and lifts welcome me everywhere.

For me stairs are pure devilry; they are ugly and inaccessible, and they shut people out. Ramps, on the other hand, are beautiful and welcoming and possible to make architectonally more appealing.

Freedom. Independence. The right to chose one's own way of life, to pursue whatever happiness one can. These might largely be only catch-phrases in the United States, but on some level I think they do provide a basis for a will to accomplish just these things for as large a portion of the public as possible. Very often attempts to reach this goal are admittedly unsuccessful, but in the case of measures for the disabled the United States have come a far way.

We need to discuss the above a lot in Sweden, discuss it with those who still subsidize activities in facilities not suitable for the disabled, with people developing technological devices, with those who work with various market aspects of products and services, and with those who are truly interested in building a society where everyone has access.


In conclusion

In very general terms, I believe that both legislative bodies, public authorities and various kinds of companies should in a number of contexts make use of expert groups consisting to at least some extent of disabled people, both when discussing legislation and different sorts of measures to be taken. As far as I know, this is done far to seldom anywhere in the world. It is often hard for disabled people to make their voice heard, and this is actually a question of giving equal opportunity not only when it comes to transportation, accessibility and general quality of life, but also in the simple matter of communication and moulding of public opinion.

Most minorities are much more vociferous than the disabled, partly because they consist of larger groups of people but also because it is easier, for example, for persons able to parade in demonstrations along city streets to make themselves noticed.

On the other hand, one can not only ask the rest of society to do everything for us. Quite naturally, disabled people must also take matters in their own hands, so to speak. The lion part of the burden is actually ours and our organization's, but without more openness and broad-mindedness from the rest of society our work is largely in vain.

The possibilities for disabled people vary greatly from country to country, and from continent to continent. Even those countries that are furthest advanced in this field, have a long way to go in order to accomplish a level of quality of life that gives disabled equal opportunity in all areas of society. Maybe this can never wholly be accomplished, since a disability is after all just that - a disability. With the advancement of modern science and technology, however, and with further advancement in legislation, and with further advancement in the work done by organizations for and consisting of disabled people, the gap between disabled and non-disabled people can eventually be bridged to the furthest extent possible. Provided, of course, that there is genuine motivation in society as a whole, and among legislators and governmental authorities in particular, to reach this goal.

Yasmin Jungestedt
Tideliusgatan 65
118 69 Stockholm
Sweden
Phone +46-8-668 91 72
yasmin_jungestedt@hotmail.com
yasmin@jungestedt.private.as