I cannot imagine better evidence of unconditional love than that.

Baby Blue, it's not all over

I traveled very light for such a major move. I had packed two duffel bags of clothes, and some classical CDs. That was it. And then of course Baby Blue. I had named her after one of my favorite Dylan songs. She is my shiny metallic blue lightweight wheelchair.

Baby Blue was my first manual wheelchair. I had become a fulltime wheelchair user just six months before the trip, 17 years after the MS diagnosis I received in a Stockholm hospital.

I remember that moment in 1981 very clearly. The moment when those two letters fell over me like a ton of bricks was a life sentence. I saw myself in a wheelchair, and spent the following weeks in the hospital trying to imagine my future life in a chair -- although I had no way of knowing whether I would actually end up in one.

I felt lucky that I was never into any kind of athletics or sports. Lucky that I would still be able to enjoy literature, music, theatre and art. So I felt I can do that -- I can cope. Thank God I did not know at the time that MS could also affect my eyesight, my hearing, my speech and my cognitive skills.

Crippled in the U. S.

I did not quite know what to expect as a cripple here in the U. S. I believed the big difference would be that everything would cost money; I thought you would need to be rich to have a good life as a cripple in the U. S. And I remember thinking, if my condition really deteriorates, I can always go back home again if I cannot afford the care and assistance that I need here in the U. S. That remains my ultimate insurance. I am not sure I would have dared to make the leap if I did not have that last resort.

Farewell Compassion

I knew I was saying goodbye to what is one truly compassionate welfare state -- a welfare system that provides healthcare, old-age pensions of 70 percent of your active pay, plus long term care and rehab for everyone regardless of how poor you are. In Sweden I had my own local occupational therapist coming to my home discussing different kinds of equipment and aids; bringing me things to try; helping me try out wheelchairs and other aids. I was advised how to rebuild my home and my bathroom. The remodeling was done, all kinds of equipment were delivered, even incontinence pads.

I knew nothing about the price of these things because I never had to pay. The same would apply if I needed to rebuild my car or adapt my workplace, or if I needed a lift or a ramp for my house.

And the benefits reach beyond my house as well.

Accessible transit with every taxi

When I needed a ride I could use a unique "handicap ride" system, a paratransit system employing over half of all the taxis in Sweden. I paid a monthly fee equivalent to a monthly bus or subway pass. It allowed me to book a special taxi, and provided a ride within the greater Stockholm area. I could get around 10 rides a month without paying more than a monthly bus pass. And I could book my trip 10 to 20 minutes beforehand.

Five percent of all Swedes have permits to use this pararansit service; the transit pass can also be used to ride on any bus, subway or tram if you are able to use one. This system -- called färdtjänst -- has been in service for almost 30 years. Only four other countries in the world have a program like this: England, Denmark, Holland and Norway.

A different perspective on rehab

Sweden has a different perspective on rehab and "long term maintenance" care. The focus in the U. S. seems to be to get people back to work so they can be productive again. In Sweden the goal is to give people the best possible quality of life, whether they work or not. I was able to apply for intense rehab training courses arranged at rehab establishments in Sweden or on the Canary islands off the coast of Morocco. I benefited from three such programs, each lasting two to four weeks, during which I had my own one-on-one physical therapist and occupational therapist every day, plus pool exercises, sailing, using off-the-road vehicles and many other activities. All this including, air transportation to the Canary Islands, cost me only an $8-a-day co-payment -- $240 for 4 weeks on a Canary Island where it is always 85 degrees and sunny.

Yes, we pay high taxes

And who pays for all this? Every American wants to know. It must be your high taxes? Yes, of course. We have some of the highest taxes in the world. And of course you will hear people complain about taxes -- but maybe not quite as much as you hear here in the U. S. The big difference is that we have a long tradition of compassion and solidarity. There is a consensus that our society has to provide certain basic things for all our citizens, particularly those who need assistance. It means that we agree to provide healthcare and education for everyone.

And most of us accept having to pay taxes to make this possible. For all my healthcare needs, including prescription drugs, I pay a co-payment that cannot exceed $250 per year. For my education, up to a graduate degree, I paid no tuition. People in Sweden seem to accept that we need to pay taxes to provide these things. A civilized society comes at a price.

The Swedish society also has to deal with an aging population, a population with more disabilities and with long term illnesses. And here is where you find the most striking differences between Sweden and the U. S.

In-home services

In Sweden, every county offers a system of community-based home assistants who come once a week, or 3 times a day, according to your needs. All that's required is a small co-payment. They also have night patrols that make visits through the night, either on a planned schedule or on demand.

If you need more than 20 hours of help a week, you can apply for personal assistants under the 10-year-old Law of Special Assistance to Disabled People, or LAS. If approved, you're allowed to employ the number of assistants you need -- you can even employ family members. And it is all free of charge.

Several organizations in the U.S., such as ADAPT, are currently fighting for something in the U.S. similar to the LAS law.

One result of all this is something my American wife brings up every time we go to Sweden. She sees more disabled people out on the streets. There are more disabled people of all ages at events. And often they have an assistant with them. So it is obvious to her and to me that disabled people in Sweden are more active and independent, more able to have an active life. They are less "disabled."

Isn't this exactly what the whole growing disability rights movement is fighting for? Yet here in the U. S., cutbacks in services and benefits occur almost every week.

It is a fight for independence and dignity. But it requires a whole new attitude and understanding from society and from people around us.

I am convinced that there is a growing awareness in the U.S. of the need for reforms and improved benefits for disabled people. We can learn a lot by looking at how these issues are dealt with elsewhere. In Sweden, our elaborate welfare system is based on a consensus around compassion and solidarity. I wish the U. S. would become a less insular culture and start to look around more for inspiration. I wish Americans would truly discover how much more there is to be found, and to be inspired by those beyond those shores "from sea to shining sea."

I plan to continue to live half the year in the U. S. as long as I can -- and keep fighting for disability rights on both continents. It is really about equal rights, about basic human rights.

Posted March 29, 2004

Björn Ljungstrom is a member of the Center for Disability Rights of West Haven, CT and a member of the MS Society.

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