I had booked plane tickets for me and my family from Oslo to LA in the USA. It has been my dream for many years to travel with my family to visit my friend in LA. But even though I was willing to pay for a flat seat in business class, airlines such as, British Airways, Virgin Atlantic and SAS, refused to let me travel because I am unable to sit up at least 40 minutes during take off, landing and turbulence. I had to cancel my tickets. I was discriminated on the basis of my disability. I decided to make a website dedicated to people with sitting disability.
If you can't sit or can't sit for very long, you have come to the right website! If you think that you can't be active anymore, maybe this website can give you an idea of how your life can still be active and fulfilling!
My name is Mosken and I can't sit for more than three minutes because of extreme back pain. I used to be a government lawyer in Norway, but am now disabled due to severe back problems. I personally know that a severe sitting disability requires huge life adjustments. I am also unable to walk for more than a couple of minutes, meaning that I spend my life laying down.
Visit the only online support group in the world for people with sitting disability! We now also have a subgroup for non sitters at my forum. One of our members have started a thread about how to cope when you have sitting disability. Read about Friends International in Wikipedia and watch our video about sitting disability.
One of our members described her life with sitting disability like this:
"This sitting disability makes me feel so isolated from the world, I stay at home most of the tme, because it's so difficult going anywhere, I get so tired and wish i could sit down and rest like everyone else. I don't want to socialize. Another difficult aspect is that people just don't understand, because it is an "invisible" disability. You can't tell by looking at me how much pain I'm in, so people just don't understand why I have limitations."
The denial of full and equal access by airlines is a major impediment to the basic rights of people with disabilities to travel, work, and be part of mainstream society.
Still, all airlines require you to sit upright while take off and landing. Singapore air has some lovely suites with beds on some of their airplanes. Summer 2008 I received this reply from them: "It is true that we have beds on our flights in business and first class. But during take off and landing you have to sit straight in the seat for security reasons."
In September 2008 I received a letter from Continental airlines refusing me to travel by stretcher even I offered to pay for nine seats. In December 2008 a received a reply from the Norwegian civil Aviatation authority telling me that "SAS's airplanes would have to, according to our information, be brought to a hangar to be rebuilt every time an airplane needs to carry a stretcher. Such modification would be costly for the airlines, as they would have to take an aircraft out of service for several days both prior and after the transport." They concluded that SAS is not obligated to carry me on a stretcher according to the European regulations 1107/2006.
If you have any questions or a story to tell, or you just want to read, please visit my message board Friends International. Send me an email if you have something you want to share about living with sitting disability!
1. Equality and accessibility for people with sitting disability
I am running the online support group Friends International. Many of the members have reduced ability to sit because of chronic pain. A lot of them suffers from neck- or back pain or pelvic pain, also called symphysis pubis dysfunction -SPD or simply hip pain. Many people suffering from coccyx pain, also have problems sitting down. Read about our members experience with coccydynia. People having Pudendal Neuralgia are recommended not to sit because pain is aggravated by sitting.
Because of extreme pain, I am unable to sit for more than a few minutes at a time, and am unable to walk for more than a couple of minutes, meaning that I spend my life laying down. The Internet, however, has made it possible for me to join the world and use my skills again. Working from my bed, I have increasingly become an advocate for the disabled in Norway, and have lobbied the European Union on behalf of the rights of those with sitting disability, a heretofore unrecognized disability in Europe.
I am using a wheel bench to be moved around when I am go shopping, visit friends or go to my doctor. The wheelbench was designed by my brother Erik Bergh when he worked for the company Handicare. Panthera Norge by Erik Bergh is now manufacturing a wheelbench called Neotech. You can email him if you have any questions about wheelbenches!
When I go visit with someone, I bring my sunbed with a mattres. The movies and theatres can be difficult because of security measurements. They usually don't want a sunbed to be in the way. I did however finally get to the movies this spring! It was wonderful to be there again after so many years!
Society has gradually become used to people in wheelchairs and people with reduced mobility in general. The accessibility has been improved for people with mobility problems. Although there is a lot more to achieve, there has been a progress in both awareness, accessibility and legislation.
It is now time to draw the attention to one of the most notable disabilities for people with back problems: the reduced ability to sit. A person with a sitting disability caused by excessive pain, is unable to sit or stand for long periods of time, and will thus have a need to lie down. The availability of benches or other devices where to lie down may be a critical factor that determines whether a means of e.g. transportation is usable or not for many persons with back problems. The specific problems for persons with back problems are usually not addressed anywhere in research, legal documents, accessibility or anti-discrimination laws. It seems like this group of disabled people is either overlooked or forgotten.
One day my American friend and I were visiting the Norwegian Viking museum in Oslo. My husband was as usual wheeling me around on my wheel bench. A guide came rushing towards my husband explaining they did have wheel chairs! Did he really believe I would be on a wheel bench if I could sit in a wheel chair? I also have experienced people making comments like: Are you really that bad? Would they say that if I was in a wheel chair?
2. Is using your computer a pain?
A severe sitting disability usually requires huge life adjustments. Suddenly you are in a total new situation. It is diffecult to eat, to wait in the doctor's office, to be social and to travel..your life is turned upside down. Society is based on the assumption that people are able to sit.
Being on the computer is often one of the first activities a person with a sitting disability reduce or give up. However, you don't have to give it up! There are many computer set ups for the back-lying! Look up this website describing different set ups for use of a computer when being in the horizontal, on the side, flat on the back or in a recliner. The website has both descriptions and illustrations. Here is another website with pictures disgribing how to lie down to relieve coccyx pain. Also see how this guy lie with his facedown to work. Some people get help from sitting on an air donut cushion or wheelchair cushions, e.g. a cushion which is cut out on one side to relieve pressure on the ischial tuberosities. Ideal for use by those suffering from spinal injuries or arthritic or orthopaedic problems. Also see the products from Relaxo Bak.
Make sure to discuss your computer set up with your physician or physiotherapist to make sure you are not inflicting more harm to your body.
I am lucky to live in a country where the welfare sometimes can design equipment helping you to continue doing the things you want to do in spite of your disability. The designer Arild Omsland in HMS made a computer stand over my bed. He made it possible for me to be online using my skills. You can see pictures of different PC stands he has made for several Norwegians with sitting disability. I don't know so much about products produced outside Norway.
Before I had my PC stand I used to work on my belly on a beanbag. That was however very hard on my neck and upper back. I worked like that for 7 years, until I had to stop because of damage to my neck and back. Watch a short video clip from my work station today: Mosken's PC setup.
If you are able to sit in a recliner, you can turn the recliner into a work station.
If you live in the US, The Americans with Disabilities Act (or ADA)requires employers to make "reasonable" accommodations for employees with special needs in the workplace.
If you need to lie down while eating or reading, you need prisme glasses. The prism makes you see forward insted of the ceiling while you are lying flat on your back. I use mine while I eat, read a magazine, look through the windows in the car or look after the kids at the beach.
3. Accessibility to all public transport?
Demographic changes in Europe has contributed to an increase of the number of persons with reduced mobility, among them elderly and disabled. Today, people with reduced mobility are often confronted with barriers in transport. Such barriers include safety problems as well as accessibility issues. People who can't sit are in serious danger when they travel in the back of vehicles lying down. It is very difficult for nonsitters to adopt safety measures that would make them as safe as sitting riders, but at least they can take simple steps to limit those scary neck, face, and upper torso injuries. See some suggestions illustrated on a website about automobile safety for the horizontal passenger.
The specific needs of persons with reduced mobility have been addressed in different Commission publications in EU, in the communication on strengthening the passenger rights and in the communication on equal opportunities of people with disabilities. The protection of passenger rights and accessibility for disabled persons have been strengthened through legislation in most areas of transportation the last years. The goal is increased accessibility to all public transport.
Since I have to lie flat on my back most of the time, I have to use a camper car to get out of the house. Expensive yes, but what to do when no public transportation has accommodations for people with sitting disability.
4. Universal design
The Norwegian Government has a plan of action for increased accessibility for persons with disabilities that aims to enhance accessibility for all, and directs special focus towards persons suffering from functional impairments. These include disabilities affecting vision, hearing, mobility, cognition and sensitivity to environmental factors (individuals with asthma/allergies). Part of this plan is something called "universal design", which means that products, buildings and physical surroundings that are used by the public are to be designed in a manner that allows them to be used equally easily by all people, to the greatest extent possible, without needing special adaptation or design.
But again, people with sitting disability are not mentioned anywhere. The question is: Since reduced ability to sit is not mentioned, will universal design include benches, sofas and comfortable reclining chairs for people with back pain?
To make sure that people with back problems are not discriminated against, the wording of all general definitions of disability needs to include people with reduced sitting ability. The objective of the legislation needs to establish rules to protect all categories of disabled persons travelling, to protect them against discrimination. To ensure this, sitting disability needs to be addressed in the documents and the regulations. Reduced sitting ability also needs to be included in all definitions of disabled people.
5. Travelling by air
The Disability rights advocates (DRA): "The denial of full and equal access by airlines is a major impediment to the basic rights of people with disabilities to travel, work, and be part of mainstream society."
The American Air Carrier Access Act, ACAA, prohibits discrimination on the basis of disability in air travel and requires air carriers to accommodate the needs of passengers with disabilities. For an American Airline it is clear that they must transport stretcher (STCR), because in the new ACAA under par. 382. 27 you can read about the obligation to pre-notify 48 hours before departure (3) accommodation for a passenger who must travel in a stretcher. And under .29 the obligation for travelling with a safety assistant: (b)you (= carrier) may require a passenger…….. to travel with a safety assistant….in one of the following categories………(1) A passenger travelling in a stretcher……………
The European Union is now acquiring the same regulations. The European Parliament adopted new regulations for disabled air passengers in December 2005. The airlines will no longer be allowed to refuse reservations or deny boarding of disabled people. The regulation’s description of disabled people does however not specifically mention passengers with sitting problems. On the other hand it is a reasonable interpretation to asume that all disabled people are included. Stretcher (STCR) is not excluded in the text in the new 1107, but unlike the ACAA, it is not specifically mentioned..
The new regulation is meant to guarantee people with disability the same access to air travel as any other passengers. But these are not absolute rights, an airline can still refuse reservations or deny boarding on safety grounds. And that is exactly what they are doing with people with severe sitting problems. Because of safety grounds they require all passengers to sit upright in their seat while taxing, take off, turbulens and landing. They estimate this time to be at least 40 minutes for both take off and landing. This means that the airlines still refuse disabled people the right to travel by air. It doesn't matter wether you pay for a fully flat bed seat on business class. You still have to sit upright during take off and landing.
To make airtravel even more diffecult for people with sitting disabilities, most airlines don't offer stretchers anymore. British Airways made this clear on their website:
"Serious illness and injury. In some situations even quite ill patients are able to travel with appropriate medical escorts. However, British Airways no longer carries stretchers on its mainline operations so passengers must be able to sit upright for take off and landing."
Virgin Atlantic is the only airline I know that offers stretchers. But they require that you pay for 5 seats and a medical attendant. It does not matter wether you have a doctor’s certificate, confirming that your disability to sit does not require to travel with an attendant.
Many people around the world are suffering from back problems today, and most of them have reduced ability to sit. The opportunities of air travel should be open to people suffering the disadvantage of reduced sitting ability, not only people with reduced mobility. As it is today, people with a sitting disability has no effective opportunities for air travel.
If you have the ability to sit during take off and landing, you are able to fly if you pay for a flat bed seat on business class. British Airways has had flat seats on first class since 1996 and on business class since 2000. Most other airlines are now offering the flat seats on long distance flying.
Compare the flat seats on Flatseats.com for different airlines.
Virgin Atlantic has seats on business class where they allow you to lean back 26,7 degrees under take off and landing. This may be a help for people with back pain that just need a recliner. Even this is not helping me, VA had a much more possitive and helpful attitude than BA when I talked to them on the phone. BA didn't even bother to answer my letters. Too bad that VA doesn't fly from Norway.
People with sitting disability does not have any equal access to air travel today. The airlines can legally refuse them to travel based on safety grounds. The new anti-discriminate regulations in the USA or EU are not helping people with reduced ability to sit.
6. Anti-discrimination in general
The right of individuals not to be discriminated against on a range of grounds, including racial or ethnic origin, religion or belief, age, disability and sexual orientation, has long been recognised by international organisations, like the United Nations (UN), the European Union and its Member States.
Although they do not grant individuals a legally enforceable right to redress, international agreements such as the UN Covenant on Civil and Political Rights, Economic, Social and Cultural Rights (1966) and the European Convention on Human Rights and Fundamental Freedoms (1950), exemplify the commitment of the international and European communities to guarantee respect for the right to non-discrimination. Since the Convention was signed, the European Community and the nations in Europe have been combating discrimination on many levels.
According to the EU Community the fight against discrimination in society will not be won through implementing legislation alone. Past experience has shown that legislation needs to be underpinned by concrete actions.
7. The Americans with Disabilities Act (ADA) Enforcement
Through lawsuits and settlement agreements, the Department of Justice in the USA has achieved greater access for individuals with disabilities in hundreds of cases. Under general rules governing lawsuits brought by the Federal government, the Department of Justice may not sue a party unless negotiations to settle the dispute have failed.
The Department of Justice may file lawsuits in federal court to enforce the ADA, and courts may order compensatory damages and back pay to remedy discrimination if the Department prevails. Under title III, the Department of Justice may also obtain civil penalties of up to $55,000 for the first violation and $110,000 for any subsequent violation.