sunflower bar

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! Visit our online support group for people with sitting disability. Register free membership!

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.

Visit one of the few online support groups in the world for people with sitting disability caused by chronic pain! We have many topics started by our members about 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:

A wheelbench for person with sitting disability

"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."

Read about beds, mattress and toppers for those that sufferers from chronic back pain. One of our members started an excellent topic about this in our support group. You are welcome to share your own experience as well!

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.

”All human beings are born free and equal in dignity.”

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.

The latest news in the world of sitting disability:

One of our members said: "I learned how inhospitable the world is for those unable to sit."

We now have a group on Facebook for people with sitting disability!

Sitting disability is now an official term in Wikipedia!

Read about wheelbenches on Wikipedia!

Virgin Atlantic told me I could fly on a stretcher from London if I hired a doctor to travel with me. This in spite of the US air carrier act stating that carriers may not require a handicapped person to travel with an attendant. Also in spite of my doctor's certificate stating I don't need any medical attendant.

Shopping from a wheelbench

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, an unrecognized disability in Europe.

 

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.


work station for person with sitting problems

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.

Prism glasses

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. A camper with beds

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. Travelling by air


I am adding my letter to The European Disability Forum (EDF) in 2016:

Lila Sylviti  lila.sylviti@edf-feph.org
EDF and the right to air travel for all
Communication Officer
European Disability Forum
Lila Sylviti,
 
We have emailed in the past about sitting disability and air travel. You may recall that I used to be a government lawyer in Norway, but am now disabled due to severe back problems.

I have been an advocate for the sitting disabled in Norway the last 15 years. In 2001 I founded an international organization called Friends International Support Group (FISG). Our main work is online support for people with chronic pain. Many of the members are sitting disabled. Sitting disabled is a broad definition that applies to those persons who cannot sit in a chair for several hours due to severe pain or dysfunction.

I appreciate EDF’s hard work to improve the rights for people with disability from all across Europe. EDF is celebrating ten years of air passenger’s right for persons with disability. (Regulation 1107/2006). As the EDF president Yannis Vardakastanis said:

“This regulation has paved the way for accessibility when travelling by air.”

I hope this eventually will happen for all groups of disabled people! However we don’t hear anything about passengers with sitting disability. In fact nothing has been achieved for this group of passenger and air travel. The airlines still not permit people with sitting disability to travel by air if they need to lay down the whole trip. Today, the right to air travel is not for all.

We have made no progress in Norway either. The airlines blame the lack of security and expenses. The airlines are after all obligated to secure the passengers. The Norwegian Government blames the EU commission and the Aviation Authority in Norway.

The airlines and the Aviation Authority in Norway agree that sitting disabled have to travel on stretchers if they cannot sit up as required. However, no airlines are obligated to provide stretchers on the airplane. Accommodation for a passenger who must travel on a stretcher is an optional service.

The airlines require disabled passengers to use stretchers if they are not able to sit up at least for 40 minutes during takeoff and landing. Because stretchers are expensive according to the airlines, this is where the discussion ends for passengers with the most severe sitting disability.

However, stretchers are not the only way to secure passengers. There are a growing number of spinal injured persons that are unable to sit, but might be capable of kneeling. The passenger could be strapped in the seatbelt while kneeling with the face inward to the seat. Some passengers with sitting disability might be able to afford to pay for business or first class offering flat seats. Since stretchers are so expensive, alternatives should be explored.

The airlines don't perceive the difference between passengers with reduced mobility and sitting disabled. A major difference is that most sitting disabled would be able to evacuate themselves without any assistance in an emergency.

The sitting disabled has as a group achieved acknowledgment for some rights in Norway, but not the right to air travel. When Norway made a Norwegian disability act in 2008, both the government and the parliament, officially said in published documents that sitting disabled have the same rights as people with other disabilities. This is published at the Norwegian government’s website.

Norway has an Anti-Discrimination Ombud. The Ombud shall enforce The Anti-Discrimination and Accessibility Act (DTL). In 2013 the Ombud ruled that a person with sitting disability was discriminated against when denied transport for disabled people. The Equality and Anti-discrimination Tribunal ruled the same later in 2013. Norwegian National TV let FISG run a 30 seconds ad for free about sitting disability at a couple of holidays in 2013-2014.

Both FISG and the Norwegian back pain Association have written several letters in the past to the European commission about sitting disability. We have also written letters to organizations in Europe and EU institutions about sitting disability, without achieving anything.
The sitting disabled’s right to air travel still seems to be an unrecognized problem in Europe and in the US and Australia as well.

According to the regulation on the rights of air passengers with disabilities, it is illegal to refuse booking or boarding a disabled person. Passengers with sitting disability are however not addressed anywhere. I think it is reasonable to believe that they have not been excluded on purpose, but rather because sitting disability has never been discussed.

See regulation No 1107/2006 concerning the rights of disabled persons and persons with reduced mobility when travelling by air:
Article 1: “Disabled persons and persons with reduced mobility have the same right as all other citizens to free movement, freedom of choice and non-discrimination. This applies to air travel as to other areas of life.”

Christophe Dussart, Policy officer in the European Commission, emailed me this in December 2008:

“On the interpretation of the Regulation 1107/2006 article 3, see article 4. it is correct that issues concerning transport of stretchers are in the gray era of the Regulation, and that this particular issue has not been discussed in the EU Parliament and the Council. It has to be explored further.”

Blane A. Workie, Chief, Aviation Civil Rights Compliance Branch in Washington, D.C. emailed me this the same year:

“Thank you for sharing your story and informing me of the difficulties individuals with sitting disabilities face in accessing the air travel system. As you already know, the Department’s disability regulation implementing the Air Carrier Access Act does not require carriers to transport individuals who must travel on a stretcher. Accommodation for a passenger who must travel on a stretcher is an optional service.”

Although it should be noted that it is the airlines and the Aviation Authorities that require stretchers, not the passengers.

I have personally not been allowed to fly because I am unable to sit for more than 5 minutes at a time. Even if I were willing to pay for a bed seat on business class, no airline will let me travel if I am unable to sit for at least 40 minutes during takeoff, landing and turbulence.

People from all over the world tell about the same problem. Our organization (FISG) has a message board and an international group on Facebook for people with sitting disability. Air travel is the most frequently discussed topic on the Facebook group. FISG also receives letters from people wanting to know how to improve the rights for sitting disabled in their home country.  

You may think that this is a small group of people. It is not. Many people around the world suffer from severe back pain and other causes of sitting disability. Back pain is the single leading cause of disability worldwide, and the most common symptom is sitting disability.

The right to air travel should be for all people with disability, not only some categories of disabilities. For this to happen it is necessary that this group of potential passengers becomes visible, and is acknowledged publicity and dealt with in public policy. Everyone I spoke to in the years after the regulation 1107/2006, said sitting disability had never been discussed. Not deliberately, but because sitting problems has in general been an unrecognized disability.

Best regards,
Mosken Bergh

If you want to read more about sitting disability, please visit our website:
http://friends.mosken.com/sitting-disability/
Wikipedia:
http://en.wikipedia.org/wiki/Sitting_disability

For Friends International Support Group         

 



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