“I would say the worst thing, at least in my point of view, is that people who live in institutions, they don’t decide anymore what they do… it may be a building with a big fence around it, and they can only go out if someone from the institution agrees to go out, they have set hours to leave and come back, when to socialize, when to eat, when to sleep. They are not allowed to bring anything back from outside… they often all have the same wheelchair… it’s a regimen where everything is decided for the people, and there’s very limited freedom.”
While I was in Paris for the Olympics and Paralympics, I had the great opportunity to meet Etienne Membrives, president of Coordination Handicap Autonomie (CHA), one of the leading independent living organizations in France. CHA is primarily a political organization that advocates for the pillars of independent living, and fights for the rights of persons with disabilities to choose and control their own lives, and live as equal members within society. These rights are strongly and effectively outlined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which has been ratified by France and over 191 countries around the world. Much of the work CHA does is to fight for the enforcement of these rights, resist when these rights are not being fulfilled or regressive policies are proposed, and advocate to French politicians and policy-makers to make sure rights to independent living go beyond words on a page, and are actually implemented for people with disabilities across France to live full, self-determined lives.
CHA was established in 2004, one year before France passed an important bill creating a system for personal assistance for people with disabilities. CHA played an important role fighting for and contributing to this bill, which was the first to introduce options for disabled people with greater support needs to live independently out of institutions with personal assistants in France. The current independent living situation in France is mixed, with some personal assistance providers across the country, as well as the option for individuals with disability to hire their own assistant directly, but also there remain many institutions across the country that house people with disabilities in segregated facilities that limit their choice and control over their lives. To receive personal assistance in France, a person with disabilities must first go through an evaluation process to decide the number of hours of assistance the individual receives per day, and funding is allocated to the person based on these hours. The disabled individual can decide if they wish to hire their personal assistant directly, or use a company that provides personal assistance services. CHA gives support to their members with disabilities across France through this process, helping them craft a personal assistance situation that works for them.
Importantly, the personal assistance system in France has flaws. For one, the evaluation is not well-tailored to individuals with less-visible psychosocial or cognitive disabilities. Further, while personal assistance can enable an individual to perform activities essential to everyday survival, such as eating, drinking, and using the toilet, it often does not effectively account for activities related to social living, and participating within the community, and people with disabilities in France may struggle to go out and meet friends or participate in hobbies or sports, even if these are things they want to do. And, as I’ve heard from other organizations, the process of receiving personal assistance depends strongly on where an individual lives, as people with disabilities who live in rural areas of France away from cities often have a much harder time finding a personal assistant.
Beyond supporting members in receiving and managing their personal assistance, CHA focuses on political advocacy work, to advance the philosophy and principles of independent living. CHA discusses directly with politicians in France, to educate them on what independent living for people with disabilities really means, how people with disabilities are legally entitled the same rights to participate in society and choose their lives as everyone else, and to make clear to politicians that independent living for disabled people will benefit everyone in society. One example Etienne shared with me of a recent success in CHA’s political advocacy was an increase in the funding allocated for personal assistance in France to account for important, unseen labor costs. Previously, personal assistance funding did not account for paid vacation time for the personal assistant, although every salaried worker in France receives 5-weeks of paid vacation. Of course, during this time, a disabled person must pay for another assistant to support their daily needs while continuing to pay the salary of their primary assistant while they’re on holiday. Costs related to overtime as well as travel of the personal assistant were also not accounted for. Through their political advocacy, and showing real-world examples of issues with the current personal assistance funding from their members, CHA was able to increase the funding for personal assistance by 15%, which more effectively covers these costs, and better enables disabled individuals to hire assistants.
One of the big goals of CHA and the independent living movement more broadly is to close institutions for people with disabilities. Institutions are generally facilities that house disabled people outside of the regular community, and, as Etienne explained in the initial quote, often rob people with disabilities of their individuality, independence, freedom, and take away the choice and control over their lives. There are over 8,000 institutions for people with disabilities across France, and there is a lot of money, and many stakeholders connected with the preservation of the institutional system. Workers in institutions, for instance, lobby hard to maintain them, and even build more. And strikingly, some of the largest disability-related NGOs in France, which are funded in large part by the French government, actually themselves own and run institutions for disabled people across the country. So, these disability organizations often stand in the way of closing institutions and allowing real independent living.
Children with disabilities with greater support needs can be especially vulnerable to ending up in institutions. Currently, there are no at-home personal assistance services for children in France, which means if parents are unable to provide the necessary support for their child due to work or other constraints on their time or energy, there is no choice for the family but to send their child to an institution. There are over 2,000 institutions for children across France, and while, in theory, these should provide education for disabled children, the education within institutions is often very limited. There is an attitude that institutions are meant more to safe-guard and house children with disabilities, rather than provide real education to enable disabled children to learn and progress within society like non-disabled children.
To provide options outside of institutions for children with disabilities, they need to be able to participate, with proper support, in regular schools with other children. There is unfortunately a lot of push-back in France against inclusive schools. Much of this push-back is related to a lack of personal assistants in schools to support disabled children. Without adequate assistance, of course it is challenging for a child with disabilities to effectively participate in the classroom. Many teachers and school administrators, though, place the blame on the child with disabilities rather than the systemic lack of assistance, which lets them make the argument that including children with disabilities in regular school just doesn’t work. In fact, there was a poll given to teachers across France asking whether they are in favor of the idea of children with disabilities being included in schools with non-disabled children, stratified based on type of disability, and the results showed 5-6% of teachers were against even the mildest forms of disability, such as dyslexia, around 10-12% of teachers were against inclusion of children with physical disabilities using a wheelchair or crutches, and 50% of teachers said they were against inclusion of children with autism and other intellectual disabilities in regular schools. This shows a high stigma against children with neurodiversity, but also means even children with physical disability are likely to encounter multiple teachers throughout their school time that disagree with their participation in regular school.
Etienne in a meeting with the South Korean disability rights organization, SADD, outside of the Amnesty International France headquarters in Paris
Etienne himself faced many barriers and discrimination throughout his time in school. For one, he was able to attend an integrated primary school, but this school was not the closest to his home, as the closest school was not accessible for wheelchair users. Following primary school, Etienne was pushed to attend a “special-ed” middle school, which he described as a kind of “light institution”. Etienne did not live at the school, but he felt a strong institutional mentality in how teachers and administrators treated students with disabilities. Most striking to Etienne was the culture of over-protectiveness, where workers tried to shelter children with disabilities as much as possible from the “dangers” of the outside world. The attitude was: although there may be limited personal choice and freedom, and much less academic rigor at “special-ed” school, it was seen as a safe-haven where at least the child with disabilities is safe and can get the support they need. In some ways, Etienne understood the roots of this mentality, as the outside world is of course challenging for people with disabilities, with inaccessibility, stigma, and discrimination. But, this is also the “real world”, and sheltering children and adults with disabilities from the real world in safe-haven institutions, and, taking away their personal autonomy is not the solution. We must instead address the problems in society for people with disabilities, and work to build a world that is open and accepting for people with all kinds of functional diversity. People with disabilities should be able to participate in real life like everyone else.
Following his three years at “special-ed” school, Etienne wanted to go back to attending a regular, inclusive high school. He told me, “No one believed me when I said I wanted to go back to regular school.” Etienne came up against a lot of resistance to transition back out of the institutional school system back to inclusive schools alongside non-disabled students. But, with determination, Etienne was able to fight to attend an inclusive high school. However, in his last two years at the school, there was a switch in head of school, and the new head was strongly against having Etienne and other disabled students at the high school. Etienne, along with his family, had to fight for his right to attend, and their case went all the way to the minister of education for their municipality in France. In the end, Etienne and his family won the case and were able to stay, mostly due to Etienne’s good grades at school. Etienne explained the hypocrisy and unfairness of the whole situation: “I shouldn’t have to compensate for my disability with better than average grades to prove I am worthy of staying at school. I should be treated like all the other students.”
Etienne was able to complete high school in the end, and he wanted to continue to study engineering at university. France has a study program that involves preparatory school, then university studies, which lasts 5-years, and at the end grants the equivalent of an engineering master’s degree. Etienne chose this study route, but he had very few options for preparatory schools to attend, as most schools either refused his entry or were inaccessible. After preparatory school, he took the entrance exam to attend CentraleSupélec, a prestigious engineering university in Paris, which was actually the same university Gustav Eiffel once studied, the famous designer of the Eiffel tower. However, Etienne was confronted with an unusual quota system for people with disabilities when applying. Although the entrance exam was meant to be anonymized, in the case of disabled students, exam evaluators ranked applicants with disabilities based on exam grades and opinions on the student’s medical file, containing sensitive details about their particular disability. Etienne was accepted to study at CentraleSupélec, but he strongly disagreed with this invasive quota system that treated students with disabilities so differently from other students, and protested against it. CentraleSupélec removed the disability quota system the year following Etienne’s admission. Etienne was the first student with disabilities to ever attend CentraleSupélec, marking an impressive achievement and display of character and determination through all of the barriers he faced throughout his educational journey.
During his university studies, it was strongly encouraged to do a study exchange abroad, and Etienne decided to get a double degree and study for a 1-year master’s of computer science at UCLA in Los Angeles, California, in the United States. After completing his double degree, Etienne stayed in California for another year, moving to San Francisco to work for Google as a software engineer. Etienne’s time in California made him reflect on how disability issues were treated differently in the USA compared to his home country of France. He observed how accountability towards issues such as eliminating discrimination against people with disabilities in employment or education, as well as ensuring accessibility of buildings, homes, and transport was taken more seriously in the US compared to France. This difference was especially rooted in the strong legal obligations laid out in the Americans with Disabilities Act (ADA), a landmark piece of legislation, passed in 1990, that makes explicit the rights to inclusion and accessibility in society for people with disabilities in America, and holds the government and private companies accountable to these obligations with the real threat of suit or financial penalty if found to be violating the legislation. One particularly reflective example Etienne shared of differences in accountability between France and the USA was related to accessibility of buses and public transport. In France, Etienne often saw that accessibility ramps were broken on many buses; however, the driver would always tell him to wait for the next bus, and the bus with the broken ramp would continue its route as if there was no problem. Sometimes, he would need to wait two or even three buses until one finally arrives with a working ramp. In California, Etienne experienced a few instances where a bus arrived with a broken ramp, but in these instances, the driver would tell Etienne to wait for the next bus, but the driver would immediately drive the bus to the depot to fix the accessibility ramp rather than continue their route, as the bus was not working properly for everyone, and someone with disabilities could threaten to sue if they are not able to ride. This way, buses with broken ramps would not continue running in circulation, making it more likely to get a bus with a working ramp. Etienne said his time in the USA had a big impact on him: “I learned a lot about different perspectives on disability and accessibility… I lived in San Francisco, near where the independent living movement started in the US, so this was also interesting for me to learn about this history. It’s a common story, I think, that people with disabilities from Europe go to this area of the states and then come back very excited about the possibilities for independent living. This was the same for me, definitely.” In 2011, Google opened an engineering office in Paris, and Etienne decided to move back to France to work at this new office. Etienne now lives in Paris and works as the technical lead on a project titled: “Google Fuchsia”, an operating system for smart-home assistants.
Beyond his day job, Etienne is the president of CHA. His role as president is to organize the different branches of the organization, such as those related to personal assistance support for members or political advocacy, as well as to craft and refine CHA’s political argumentation for advancing independent living in France. CHA is made up of a wide variety of people, from lawyers and teachers to university students, and impressively, everyone working at CHA is a volunteer, with no paid positions, and the organization is upheld by dedicated independent living activists across France, such as Etienne, who volunteer their time to advocate for this cause. Etienne originally got involved with CHA after he returned from the United States, when he joined a protest in 2014 sparked by the French government’s decision that year to push back accessibility requirements for public transportation, businesses and public services from their original deadline of 2015 by 10 years to 2025. Etienne met many CHA members at the protest, which started his involvement in the organization. Unfortunately, accessibility within society is still often neglected in France. In 2018, for instance, the French government reduced the accessibility requirement of new housing units from 100% needing to be accessible down to just 20%. Etienne told me of an example on his own street, where a shop near his home was completely renovated. The shop originally had a step leading to the entrance, and rather than creating a ramp or making the shop accessible with the new remodel, they instead re-built a brand-new, inaccessible step.
In his political advocacy as CHA’s president, Etienne hears many arguments against independent living and de-institutionalization. Those opposing independent living often say: “it will cost too much,” or “institutions are safer for disabled people,” or the ever-present argument that, “some people are too disabled to live independently in the community.” Of course, these arguments can all be effectively countered, as jobs in institutions would not actually be lost, but could be transferred to jobs within the personal assistance market; providing personal assistance does not actually cost more than institutions, especially when you account for the fact that disabled individuals recover their ability to contribute within the economy and within society when living independently outside of institutions; disabled individuals are actually much safer when they have choice and control over their lives with the support of personal assistance rather than in a state of dependency in institutions; and finally, independent living is possible for everyone, no matter the extent of disability or presence of cognitive disability or neurodivergence, as everyone has the ability to communicate their wants and needs somehow if we truly listen, and the degree of independence can be tailored to each individual with methods such as supported decision-making (check out ENIL’s informative myth-buster on independent living for more information and further sources). Still, many structures of discrimination against people with disabilities persist, and society is reluctant to change, continuing to restrict the civil rights of people with disabilities, and treat disabled people as second or even third-class citizens. This is why the work of organizations such as CHA is so important! Independent living is not asking for anything special, it is simply the demand for the equal human dignity of people with disabilities to be recognized and valued, and for everyone across the spectrum of functional diversity to have the same freedom to choose and control their own life. Etienne himself says it best when he explains what independent living means for him:
You can learn more about the work of Coordination Handicap Autonomie (CHA) on their website. CHA also has a fantastic YouTube channel, with an abundance of valuable videos explaining various topics related to independent living from a variety of perspectives. If you want to support the fight for people with disabilities to live independently within society, please donate to my fundraiser for the European Network on Independent Living (ENIL) at the following link: https://gofund.me/e2702b31