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 my online support group for people with sitting disability. Register free membership!
My name is Mosken and I can't sit for more than five 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.
Read my last letter to the EDF (European Disability Forum) about sitting disabled and the right to air travel. EDF is celebrating ten years of air passenger’s right for persons with disability. (Regulation 1107/2006). So I wanted to remind about sitting disabled. 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.
Visit the only online support group in the world for people with sitting disability! One of our members in the UK has started a thread about how to cope when you have sitting disability. Another member in Australia runs a topic with photos of adaptions we make with sitting problems. Don't miss our sitting disability group on Facebook. Watch our video about sitting disability.
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 a 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."
1. Equality and accessibility for people with sitting disability
Many of the members of my Friends International support group (FISG) 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. How to achieve acceptance for sitting disability in your country?
I also have reduced mobility. This means I spend my life mostly laying down.I have been an advocate for the sitting disabled in Norway the last 15 years. I have lobbied the European Union on behalf of the rights of those with sitting disability, an unrecognized disability in Europe.
I am using a wheel bench to be moved around when I go shopping, visit friends, or go to my doctor. The wheelbench was designed by my brother Erik Bergh and his colleges, when he worked for the company Handicare. Panthera Norge by Erik Bergh is now manufacturing a wheelbench.
When I go visit with someone, I bring my sunbed with a madras. The movies and theatres are out of the question because of security measurements. They don't want a sunbed to be in their way.
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 picturesdisgribing 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. Coccyx gel seat cushion is also sold on Amazon.com. Ideal for use by those suffering from spinal injuries or arthritic or orthopaedic problems.
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. People outside Norway have a wider aspect of ergonomic products available for when using computers. You can get a work station for lying down, and a sit-to-stand system, if standing is better for you than sitting.
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. Travelling by air
I am adding my letter to The European Disability Forum (EDF) in 2016:
Lila Sylviti [email protected]
EDF and the right to air travel for all
European Disability Forum
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.