Interview: Regine Abadia and Ryadh Sallem
You’re listening to Radio Independent Living documenting disabled people‘s struggle for self-determination
For years Marcel Nuss has been fighting for his right to live like everybody else -, in the community and not in a residential institution. He had to fight, because he is disabled and uses a ventilator 24 hrs a day, because he needs personal assistance - and because he lives in France where people like him are still not considered to be ready for a life outside of hospital-like institutions.
Régine Abadia and Ryadh Sallem interviewed Marcel Nuss in his home in Strasbourg on behalf of Radio Independent Livings. Marcel talks about his life, his fight against the authorities, his successes and setbacks. Life has become a bit easier, he feels. Before 2002 the options were not very bright for people who needed assistance with everything.
"Before 2002, the French system was simple - help for survival. With an extensive disability you could choose between living in an institution or depending on your family who had to sacrifice their own lives or living by yourself, under constant fear of not having anyone near when you are in danger. I knew a forty-year-old woman with a respirator, and on oxygen during the daytime, living alone three-fourths of the day and sleeping alone in her apartment. On weekends she only had a visit from a nurse four times a day. She lived on dried food and cookies because she had no one to prepare meals for her. If the nurse didn’t arrive in time, she was left sitting in her own urine or feces. This is how things were.
Before 2002, the only way to receive assistance at home was through a homehelp agency which would send you one or more aides for two, four or six hours. You had no say in who was to come nor about the financing of this assistance. Instead of being in charge of your life, you were an object of care. If you got along fine with the aides, it was okay, but if you didn’t - tough luck. There was no choice, that or nothing. What’s more, a homehelp service, can send you up to thirty different aides within one and the same month. Imagine - to be bathed, helped with the toilet by thirty different pairs of hands. It’s inhuman.
In France, institutions still dominate. But now, a movement has started that challenges their monopoly position. Institutions are fighting back because, first, they deny us our individuality, and second, their costs are considerably higher than the cost of community based services, as my own experience has shown. An institution can never offer the same quality of life as assistance at home."
Compared to other people with a disability who need assistance for 24 hrs a day Marcel Nuss is in a good position. But to get there was tough.
"My financial resources are the Benefits for Disabled Adults, currently € 750 per month - a person is supposed to live on that. I also receive what we call the CTP, third party compensation allowance. € 800 per month which is used for paying a caregiver. At the present rate, you can't buy more than three hours of assistance per day. With three hours a day, you won’t get very far, if you are dependent on others day and night. This is how it was until 2002, and how it still today is for many people who live at home. In France, everyone has a clear conscience, since they figure the situation is not too bad.
Before 2002, I was married, with two children. For more than twenty years, I depended on one and the same person, who took care of me day and night, and that was my former spouse. When we first met, I had been in an intensive care unit for five and a half years, I was costing the state a fortune every day. Then, from one day to the next, she gave up everything and agreed to live on CTP - a pittance for a person who worked day and night, without a day off, without vacation. Nothing."
Already in the 1980's Marcel Nuss realized that he had to get relief for his wife, if he wanted to save his marriage.
"In 1988, I began making noise. I said, “This is an outrage, my wife takes care of me day and night, and all she gets is CTP which is not enough to live on. There must be another way." For two years, the regional authorities evaded me, until ‘91, when I received a letter that said, “We’ll grant your wife half-time pay as a home health aide. She will report to a home health care service, but she won’t have to work for them." That gave us some relief for ten years, but it was still an inadequate solution.
Our situation was dramatic. It ended in a divorce. There is nothing worse in a marriage where one partner is totally dependent on the other than the role confusion imposed by society. This role confusion destroys a couple, because it’s impossible to be wife and lover, caregiver and mother - all at the same time. And you can’t love a woman when you depend on her day and night. It creates unacceptable situations.
When my wife had been burned out for 4 years, and we had serious problems in our marriage, we met with Sègolene Royale, the socialist minister for families and the disabled from 2000 to 2002. We tried to patch up our relationship. We wanted Gaby to go back to her nursing career, which she had given up for twenty years. We wanted to get an agreement from the Minister: Gaby should get a nurse’s salary equivalent to what she would have earned, if she hadn’t stopped working. Five months later, after a discussion, we separated because we felt it was no use to go on, that she would just keep destroying herself more and more, and it didn’t make sense.
In January 2001, they generously granted us another part-time home care aide salary, which I think is pretty stingy and, well, humiliating, because it completely disregarded what we wanted. So I called the Ministry back and said, “That’s very nice that you want to pay another salary, but I have a problem with it. We are going to separate and I refuse to be put in an institution. I will need assistance day and night, what can you offer me?" The other end of the line went silent until the officer at the Ministry said: 'Err, I’ll talk to the Minister and call you back.' He didn’t call back, of course."
Eventually, Marcel's direct contacts to the Ministry of Health and Social Affairs paid off. But first he had to threaten with a hunger strike.
"In the middle of all this, I sent a fax directly to the Minister telling her that since she didn’t seem to grasp the urgency of the situation, I was going on hunger strike on January 14th, six days later. And I listed the names of ten journalists who got copies of my fax. Later I heard that the fax created a real stir. On January 14th, with the French Press Agency at my side, I got a phone call: “The Minister has decided to grant you an annual sum of 50,000. I said, Thank you very much, that’s good news. After some calculations I went on, "There is a problem. The 50,000 are a big improvement, but you seem to offer me only part-time self-determination. Apparently you think I can live at home for four days and spend the other three in a hospital. I won’t do that. It’s a step in the right direction, but you’ll have to come up with something better." So for two months, I sent letters and faxes to the Minister without getting any answers. Meanwhile, my wife was still there because she didn’t want to abandon me in that situation. Those two months cost us dearly.
Through the Internet and the media, other disabled people in the same situation heard about what I was doing and contacted me to tell me and gave me their support. I wrote to the Minister saying, “In the absence of a response from you, Madame, on March 11th, five of us will carry out a hunger strike in front of your ministry, right on the sidewalk." We showed up on March 11th. When I got there, the media were there, as well as the other strikers. I had hardly gotten there when some advisers approached me and said, “Mr. Nuss, we are waiting for all of you inside, we’d like to invite you for lunch and explain the measures that we have decided to offer you." So the hunger strike was nipped in the bud.
They announced the creation of what would be known as the “dispositif grande dépendance" (Dependent Persons Allowance). This state funded allowance is for paying people, in lieu of home helpers whose salary is 804 per month. I was granted the sum for six salaries, plus a subsidy. Altogether around 83,000 per year and 3,000 more than what they‘d offered me before. With this money, I employ four full-time assistants. Apparently I am the only one who receives this much. So far, there is no law covering this solution, only guidelines.
As a consequence of the Dependent Persons Allowance, a new profession has emerged from the situation during the last two years. I call the workers “assistants". For the time being, their role is not clear. The profession is just developing, they do not have a union yet. In practice, it is a person with some degree within social work. It’s a profession somewhere between a home helper and a teacher.
Assistant have been individually trained to perform certain medical procedures - for example, in my case they help me with suctioning, change my respirator canulas, and other medical tasks that I delegate to them and for which they have been trained. That’s one of the characteristics of the assistants’ profession.
This is one of our basic demands. For us, self-determination means being able to work with competent people who are qualified and capable of taking on responsibility for medical procedures so we need not depend on nurses. When I travel to Paris, I bring my assistants with me and I don’t have to seek out the services of a registered nurse on location. I can go to Lyon, Timbuktu, Marseille or Amsterdam, or anywhere I choose."
Experience has taught Marcel that power is in numbers. That’s why he organized a network.
"In 2002, I proposed the creation of a network called “Disability and Self-determination" (“HANDICAP et AUTONOMIE"). Why a network? Because, in France, associations have a perverse, double role. The larger ones represent our demands, manage residential institutions and home care services - all at the same time. On the one hand, they support our actions and demands for self-determination, essentially, that we manage the funds that the public allocates for that purpose. On the other hand, they are masochists because they’d lose a lot of money, if we would bypass them and take charge of our own lives. For purely commercial reasons, an association would have never dared to encourage its members to go on hunger strike.
From the outset it was obvious to me that the only way to win our case and institute a policy in the interest of persons living in dependence on others was to unite. Our "HANDICAP ET AUTONOMIE" network is unique, because it is not based on any limiting bylaws. Anyone may join, associations or individuals, without any obligations, other than defending our right to self-determination and freedom of choice for disabled people in general, and for assistance users, in particular. In this way, we’ve been able to quickly get recognition from the Ministry and to work with them.
The Ministry was overwhelmed by the situation and was incapable of dealing with individual cases. A ministry’s role is not to handle individual cases anyway, but to establish general policies. Because people in the Ministry knew me, the idea came up that I should get involved in working with individual cases, since I was familiar with the problem. That’s what I did for three months. I had no previous connection to the Ministry, had the title of a collaborator to the Minister. Because they supposedly didn’t have the means, I was paid the minimum wage although I frequently worked seven days a week, often until ten o'clock at night. Meanwhile, the government wasted plenty of money, for example, some 100 million for sending top officials to attend the beatification of Mother Theresa."
Marcel Nuss did not want to be a token crip and help cover up the government's disinterest in assistance users' dismal situation.
"The problem in this country is that things are run by people who haven’t got any idea of what it’s like to live with a disability from day to day and what’s more, who work in the ministries without a single disabled colleague. I was the first and only one, I think it was the first time in the history of France that a person with such a severe disability had been hired for such a level.
I resigned because I neither had the financial means nor the executive powers to carry out the work that was asked of me. In addition, I had been deprived of all of my responsibilities. On several occasions, I found the ministry to be in error, and one day I noticed that I had been lied to and kept out of a meeting that I was supposed to attend. There was no point in staying."
Certainly, disabled people are discriminated against in France, Marcel thinks. But they are not the only ones.
We’re all subjected to discrimination - the homeless, the unemployed, minimum wage earners, whites, Arabs, people with disabilities or women - all are discriminated against. As soon as you differ from the average in any way, you are discriminated against. So I don’t feel like I am subjected to more discrimination because I am disabled. It’s clear that we are not equals. For the last two years I have not been fighting for people with disabilities but for freedom of choice in our society. I want to know the place and value of individuals in this country. So far, I haven’t gotten any answers, because that’s too threatening.
I felt humiliated in school many times, because at the time we didn’t have what are known as “integration aides", people who assist disabled children at school. My brother took me to school. I quit school, because at 15, my body couldn’t keep up. With a computer, I could have continued. Without an integration aide, if I urgently needed to go to the bathroom and could not control myself, I would end up relieving myself in my pants. That’s humiliating. In any case, the humiliation hasn’t ended, even if it is no longer perceived that way. I have often been thrown out of restaurants. About a year ago, I was with people from the Ministry at a restaurant and the owner leaned over to my assistants, asking “Is he dining too?" They answered, “Well of course!" “Well, I have to tell you that I won’t take any responsibility for it, so who will?" All of this is very common.
The system that I got started, and benefit from, is to my knowledge unique in the way it functions, unique in the hopes that it gives rise to, and in the freedom that I now enjoy. My hope and desire, and this is why I continue to fight, is that others, one day, will benefit from the same that I have. The same, that is, adapted to their wishes."
Right now Marcel is happy with his private life, though his marriage failed. He has met a new love.
"My partner is one of my assistants, and life is full of fun. This is another fantastic story. In early January, 2002, when I had just announced my hunger strike, the head of a training school asked me if I would give a talk on self-determination, and I accepted. During the talk, I announced that I was looking for four assistants. At the end of the lecture, four people came up to me. And one of them was Marie who became my first assistant. She had barely started working, and Gaby was still there, when we fell in love. I have been spared the experience of loneliness. Like in a fairy tale I stumbled into another world filled with the total commitment, as I had wanted to live, for an idea I have of democracy, of love. I can hardly complain about my disability, even if it isn’t a dance on roses, even if the battle is far from being won, but at the same time, my disability has opened me up to many other things."
Of course, it is important to stand up against the oppression of people with disabilities, Marcel underlines. And of course, it felt good to earn money at the ministry. But his dream is to be a writer.
"I started writing at the age of twenty in the Intensive Care Unit. Since I could not hold a pen, I had to content myself with poetry - a poem I could memorize and dictate. Sometimes I had to remember poems for 48 hours because all nurses were busy. That was a limitation, since it was impossible to keep a whole novel in my head. So when voice controlled computers came, I jumped at the chance. I would like to live on my writing - autobiographical writing, for one - but that is not so important to me. I have novels that are waiting to be published, collections of short stories and poetry."
Marcel Nuss may have a life with physical limitations, but he certainly does not seem limited in expressing his feelings, insights and aspirations.
"My greatest fear has always been the idea of suffocating to death. Because I am on a respirator 24 hours a day, I have a special attitude to the thought of suffocation. Apart from that, there is the fear of not doing all the things that I want to do. At the Ministry, I tasted the pleasure of having professional and social status. I enjoyed earning my own money, and I would like to do that again very soon.
What has given me dignity is knowing that I am what I am, and that no matter what happens to me, nobody can ever reduce what I am. My dignity stems from my certainty to be free.