"Depending on family solidarity is ludicrous"

APF France handicap is a French organisation that defends and represents people with disabilities and their families. In the context of the French presidential elections, the organisation is initiating a citizen debate on “social protection: what model for tomorrow?”. The particularity of the approach is to bring together the views of people with disabilities, carers or relatives and citizens outside the disability field. We asked some participants about their motivations to join.

“Depending on family solidarity is ludicrous “

At 28, Stéphanie lives separately from her partner. A choice? Not really. Settling down as a couple would prevent her from receiving the AHH, the disabled adult allowance (1). This is one of the reasons why she decided to take part in the APF France handicap’s virtual debate on the social protection of tomorrow. “I would be totally financially dependent on my companion, whether we were married or not. I would like politicians to understand that being disabled is not a choice. It’s ludicrous today that we depend on family solidarity to such an extent, by maintaining precariousness and relying on those who are already daily carers.

“I would like politicians to understand that being disabled is not a choice. It’s ludicrous today that we depend on family solidarity to such an extent.”

– Stéphanie

Another phenomenon: most people with disabilities are forced to be tenants for life. “900 per month is not enough to allow me to have children and to buy my own home.  Through her life experience, Stéphanie has one very specific objective. She advocates that society as a whole should feel concerned by the global issue of social protection. “I am a citizen before being a person with a disability.”

(1) On 17 June 2021, the majority and the Modem did not support the bill allowing the spouse’s income to be disregarded when calculating the disabled adult allowance (AAH) (see articles below), in the face of all the opposition parties who, for once, had put up a united front. To the despair of the people concerned, this text was not voted…

“Better dialogue between social and health sectors”

Caroline is a teacher and researcher in palliative care and end of life support. As a survivor of a serious accident as a young girl, married to a husband who has been through three cancers, she has had her fair share of hospitals. She has been practising her profession, which has now become a passion, for 20 years now and has been sharing, listening and accompanying professionals in training who are questioning what is best and what is possible to alleviate the suffering of their patients and their loved ones who need to be accompanied until the end.

“Social protection can no longer be financed so much by the fruits of labour or taxes on small businesses. Many people are already being crushed with the weight of financial debts.”

– Caroline

Caroline knows the APF France handicap association well. She was asked a few years ago to lead an ethical group on pain management and communication with people with disabilities, and she is now back to take part in the citizen debate. For her, it is important to create a better dialogue “between people from the health sector and people from the social sector because we do not all have the same discourse or the same approaches in the overall care of the person“. Her message?  “Social protection can no longer be financed so much by the fruits of labour or taxes on small businesses. Many people are already being crushed with the weight of financial debts“. Today, she thinks she should retire, but she still needs to find a replacement.

” If you want to fight certain ideas you have to understand the why”

Originally from the Var, David is a 43-year-old idealist who dreams of a better, more humanistic and united France. He even hopes to run for president in 2022. His campaign collective: “Towards humanism” because “we don’t hear enough about humanism in politics today, and it is probably the solution to all our problems”.

“We don’t hear enough about humanism in politics today, and it is probably the solution to all our problems.”

– David

For him, the citizen debate organised by APF France handicap is an opportunity “to learn how people think, because if you want to fight certain ideas you have to understand the why”. His project for the future: to collectively build an alternative to capitalism which “exhausts both human beings and nature“.  From the revalorization of women’s jobs to a universal income, from taking into account the blank-vote to massive investment in the fields of ecology and health, his programme is “enriched by the discussions with the participants at his table, whether we are aligned or not“.

“We have everything to gain by being in the common law”

Denyse has been disabled for over 40 years, after a stroke during her maternity leave of her second child. She first returned to work partially before having to stop, as travelling was no longer compatible with her life. And despite her degree in economics and experience in banking, she could no longer find a job, “a place to stay” as she puts it.

“I have always appreciated the participatory approach because we move forward.”

– Denyse

She has been a volunteer with APF France handicap for 30 years now because she cannot imagine staying at home. Since 2007, Denyse has been an elected councillor in the local section of the association in Loire-Atlantique. This involves adapting and implementing the values and policies of the national board of directors at departmental level and adapting them to the local context. In addition to her associative commitment, she is also very much involved in the MDPH (departmental house for people with disabilities) and more particularly in the French “Commission des lois et de l’autonomie”. Beyond the subject of social protection and the “public/private” issue that interests her, she accepted the invitation to the citizen debate because “I have always appreciated the participatory approach because we move forward together“. She expects this experience to produce “constructive proposals for the candidates” and to “bring this issue to the forefront of the campaign“, even if she regrets that people are not more concerned about it. For her, starting with people with disabilities allows to reveal wider societal issues and to have proposals that benefit the whole population. This is why the debate must be broadened at all costs and why we must get out of the “in between”: “We have everything to gain by being in the common law. The aim is not to put individuals forward, because we are a collective. I have always preferred collegiality, it is important to have everyone with you.

“I want the group to be listened to”

Sylvain is a teacher of adapted physical education for APF France handicap in a medical-social establishment in Savoie, the French Alps. What motivates him is to enhance people’s abilities by sharing activities that generate pleasure. At first skeptical, he agreed to take part in the Citizen Debate organised by the association on social protection.

“It must be possible to remove the obstacles to regular physical activity or sport, including by developing inclusive sports provision that benefits everyone.”

– Sylvain

Sylvain has been working for APF France handicap for 3 years. If he agreed to take part in the association’s Citizens’ Debate, it is because he believes in the strength of projects conducted as a team. His motivation is to achieve a more inclusive and supportive society. For him, his participation is important to feed his knowledge in his field of intervention, to be able to listen to experts, and also to exchange on the theme of social protection with the men and women he supports.

Sylvain skeptical at first: “Citizen participation?  I was a bit reluctant; I doubted its effectiveness. That’s why I didn’t set high expectations so I wouldn’t be disappointed. In the end, he was seduced by the intensity of the experience: “I want to give all I’ve got. I the candidates at the coming French elections would listen to what we’ve got to say. And that one or two proposals could be retained.” Sylvain also underlines his ecological sensitivity which he finds in the debates: “The participants are aware of the strong link between the environment and health.

The 35-year-old teacher is driven by his fight for equal access to leisure activities and for the beneficial effects of physical education to be known and recognised.

“People have so much knowledge!”

Catherine is a 56-year-old woman from Toulouse, a major city in southwestern France. She graduated as a lawyer and now works as an insurer in the injury litigation department of an insurance company. For the past 30 years, she has been dealing with disability issues on a daily basis through taking statement from people who have lived through road traffic accidents, home-related accidents or even medical accidents.

“Social protection is a permanent issue. Rethinking it is not a fear of the future but an ideology of defending people’s rights”

– Catherine

But Catherine is worried: “For 30 years I have seen the evolution of the scheme, the health insurance business, medical desertions: the situation is dramatic! For her, our social protection system is essential and precious, but it needs to be refocused and revamped to adjust public spending as well as possible, in particular to create new jobs related to disability support. For these reasons she places a lot of emphasis on the Debate and the implementation of the proposals at political level. Her initial fears were that the Debate would be biased in favour of certain measures. In the end, she finds the quality of the Debate and the depth of the interventions just as varied: “I am really impressed and delighted by the way people are so involved in the process. It’s a marvelous experience, I have learnt so much. People have so much knowledge! And the debates were rich in information, emotions, and bravo for the choice and quality of the speakers“.

“Provide collective answers and solutions while building on our personal experiences”

At 56 years old, Stéphane has lived with cerebral palsy since birth. A disability that has not prevented him from being active, quite the contrary. He graduated as a computer scientist and worked in an industrial firm and then in a multimedia company for people with disabilities.

“To address the uncertainties of tomorrow and prepare for future generations, we need to provide collective answers and solutions while building on our personal experiences.”

– Stéphane

In 1989 Stéphane became a volunteer with APF France handicap, a French organisation that defends and represents people with disabilities and their families. There, he found personal fulfilment and meaning in his commitment. His experience in computer engineering brought a great added value to the association and its new members.

Convinced that social protection is everyone’s business, Stéphane is proud to take part in the APF France Handicap’s Citizens’ Debate, to perform a civic act and to share ideas. For him, this subject is more than important in view of the period of uncertainty in which we live, particularly for future generations: “We all belong to a minority class, each with our own daily concerns, and that is why we must try to provide answers and collective solutions.

Delighted to be a part of this democratic experience with “constructive exchanges calling on everyone’s experiences“, he hopes that the French presidential candidates will take the proposals into account.

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