The enemy in the home – housing for the disabled in France

The enemy in the home – housing for the disabled in France
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“I don’t want people living with a disability to be left without a solution. That will be one of the priorities of my five-year term. Today there are millions of people with a disability, and their families, with nothing to help them, people who are left to their own devices, for whom nothing is done to help meet their daily needs. Nothing!” These words were spoken by the then presidential candidate, Emmanuel Macron, on 3 May 2017 during a televised debate between voting rounds with Marine Le Pen.

Despite this promise, the French government has just got parliament to vote for a housing law (the ELAN Law) which, in Article 18, foresees a reduction in the number of new homes built that have to have disabled access from 100 per cent to 20 per cent. The government’s goal is clear: it is time to ease the restrictions on the housing market by relaxing some of the standards restraining it, to create the so-called ‘building boom’ which will supposedly bring rents down.

For people with a disability however, who at their different levels represent nearly 12 million French citizens, it is a bitter pill to swallow. For the great majority of people, finding somewhere to live is already difficult. But for the disabled, it is even harder. And the introduction of the ‘adaptability principle’ (to make homes adaptable, i.e. to do alterations to make them accessible) risks making things worse.

Landlords are likely to prefer renting to people who will not require extra work to be done on the home, further excluding people with a disability from life in the towns.

“By voting for the Elan Law, this country’s MPs have sent a clear message to the disabled: we have decided where your place in society is, and it is not with us. You naturally have fewer rights,” says Elena Chamorro of the Fighting for the Equality and Emancipation of People with Disabilities Collective (Collectif lutte et handicaps pour l’égalité et l’émancipation, or Clhee). The associations believe the law will reinstate quotas with the effect “that part of the population will be assigned to places they do not choose” as the National Consultative Council for People with Disabilities (Conseil National Consultatif des Personnes Handicapées, or CNCPH) pointed out.

Many people with a disability are isolated because of the problem of accessibility, to their homes, to their towns, to public transport. To undermine access to housing for the disabled is to undermine access to their town and everyone’s right to choose where they live.

 

Odile Maurin in her apartment in Toulouse, on 11 June 2018. It is on the fourth floor. Odile had to fight, as her illness progressed, to get an automatic door fitted on the ground floor.

Photo: Tien Tran

Odile Maurin has Ehlers-Danlos syndrome, a rare genetic disease that affects less than one person in 2,000. She has been living with the condition for 20 years. Standing up is painful and prevents her walking more than a few paces. She has been fighting to get her landlord to fit an automatic door on the ground floor of her building. She is the chairperson of the Handi-social Association: “The state and the authorities in general don’t give us anything,” she tells Equal Times. “We have to fight for everything we need.”

 

Odile Maurin takes a shower with the help of her ‘living assistant’ in Toulouse on 11 June 2018. The assistant comes for a few hours every day. She helps her prepare meals, shop and do the housework.

Photo: Tien Tran

It is impossible to access the shower with her wheelchair because there is a step. For the time being, she can still get up and take a few steps to get into the shower cabinet where she sits down. But her disability is very likely to get worse, and will soon prevent her getting into the shower. Nothing in her flat is really adapted to disabled living, and her wheelchair won’t go into the bedroom or bathroom.

“I have to prepare for my future,” she says. “Because this illness will progress, probably for the worse”. Odile thinks about her next home, which she would like to be fully automated. “Sometimes the pain prevents me getting out of bed and in this apartment it is getting impossible for me to move around,” she explains.

 

Emmanuelle has multiple sclerosis and has to hold onto the walls to get into her apartment, as seen here in Toulouse, on 16 June 2018. Climbing the two storeys to her apartment soon wears her out.

Photo: Tien Tran

Emmanuelle was diagnosed with multiple sclerosis in 2016, after feeling acute pain when she put her foot on the ground. The illness progresses from one attack to the next. These get steadily worse and leave the person more and more disabled. She manages to move around the apartment by leaning on the walls as she moves along with her paralysed left leg. “It struck me while I was still young. I was cut off in my prime, all my plans were torn apart. Psychologically it is very hard to deal with; it took me a long time to get used to the idea, it is still difficult now to fully accept it.”

Emmanuelle’s home has not been adapted: there are 34 steps between her apartment and the street outside. Going out has become an exploit in itself: “It takes me three or four hours to get myself ready”. Her kitchen sink and counter are too high: “My daughter will prepare my meals from now on”. Her daughter also helps her get out of the bathroom when the pain is too great for her to do so herself. Non-adapted homes also affect the disabled’s near and dear ones and their quality of life.

Once outside, the obstacle course continues: “Steps are a nightmare for me, I can’t go up them in my wheelchair,” she tells Equal Times. “Going to see friends or to a restaurant is getting complicated: it has to be planned in advance, I have to check if there is room for the wheelchair, if I can get there and leave easily”.

 

Emmanuelle has a coffee with her friend Viviane who works in the neighbourhood bakery. They became close when the first signs of her illness appeared.

Photo: Tien Tran

As her illness progressed, it was vital for her to find accessible housing. But the Toulouse authorities only offered her a home in the suburbs, several hours by public transport from the city centre. “I refused,” she said. “At the age of 45, you don’t make new friends so easily; imagine what it is like with a disability: I need my friends too much to leave”.

While she can still get down the stairs, with difficulty, at the moment, her wheelchair can’t follow her. “I depend on others to get out of my home,” she explains. “As my disability progress, I have seen friends take their distance, while the local residents, who saw me beginning to limp, then walk with crutches, and finally use a wheelchair, have become closer to me; they are the ones who make it possible for me to get out, who stop me wanting to shoot myself, I can’t leave them”. The Toulouse authorities did finally provide her with adapted housing in the same neighbourhood.

 

This is Hortense in the apartment in Toulouse where she lived for over 50 years. As her physical capacity diminished and her neighbourhood changed, she gradually found herself a lonely prisoner.

Photo: Tien Tran

Hortense Thellier, who died last year, was 97 years old. She suffered from numerous health problems and lived on the third floor of a building without a lift. “We used to have everything in this neighbourhood, haberdashers, newsagents, jewellers, grocers… we chatted, we passed the time of day. The supermarket is too far away for me, I haven’t been able to go there for a long time.” Bit by bit, the town changed, and left her a recluse in her own apartment.

She got too old and too tired to leave her home: “I have too many health problems, I can’t get down the stairs any more, I can’t get up them either so I stay at home, alone,” she sighs. She had no children, and no-one close to her, they had all died.

Social isolation is already a scourge of modern society and it is even worse for people with a disability. One thing that the people who shape public policy fail to bear in mind is that inaccessible homes cut people off from any social life and prevent them from visiting their families and integrating into their towns and neighbourhoods.

This story has been translated from French.