Independent living is a cornerstone of the rights of persons with disabilities. While the independent living movement has been growing in Europe, we still see a general lack of understanding around what independent living means, and numerous barriers to its realisation for most persons with disabilities.
For young people, independent living is particularly crucial. The ability for young people to have agency over how and where they live can have an enormous impact on the direction their lives will take, the contacts they will make, and the perspective of achieving their goals. It also contributes to healthier relationships with their families and friends.
At EDF we have collected some testimonials. These personal testimonies explore aspects which are important to consider when it comes to independent living, the impact it has on people’s lives, as well as some of the challenges people face when it comes to living independently as a person with a disability. We have tried to focus in particular on the issues faced by young people with disabilities.
Read a selection of individual stories and opinion pieces from throughout Europe. Some of the respondents have asked to remain anonymous. Please, be aware that they reflect the individuals’ own views and personal experiences. The scenarios they portray might not necessarily ring true for other people in that region or country. The testimonies in this document might therefore differ from your own experience and views as a reader. It is also possible that they might refer to policies or practices that have since changed in the country in question.
Personal budget and choice of assistants
Anonymous from Belgium who has a spinal injury.
I was 27 when I sustained a spinal injury (C5/6 ‘complete’ quadriplegia). In many ways, I was lucky in that I benefited from rehabilitation in a modern centre, which included up-to-date medical care, education about many things, from personal medical care to psychological support, and introduction to post-rehab support networks. However, I was not informed in any detail about the concept of independent living (for example, the importance of being in complete control of financial budgets for employment of personal assistants (PAs), rather than relying on services where decisions would be made by someone else). Therefore, after rehab, I spent several years dependent on people I did not necessarily like or who were not necessarily good at the job of being a PA.
As I became more experienced living with spinal-cord injury, I gradually started to employ people whom I liked and who were more suitable for this work. However, because I did not have an official budget to do this, the work was informal and was funded from my own personal income. Therefore, it was extremely limited in its scope and neither I nor my assistants had any legal rights regarding insurance, employment etc.
Now, more than 20 years later, I have an annual budget from the government which is not means-tested against income and which I have complete control over to employ people as personal assistance. This gives me great autonomy and independence in my life, allowing me to work and earn an income, participate in sport and pull my own weight in the household. It also means that my assistants are paid a respectable wage and are fully covered regarding Social Security contributions and work accident insurance. For the State, it is also an economically beneficial arrangement, as all of my budget money goes straight back into the community, supporting the assistant and their families, and I undoubtedly have better quality-of-life and better health, meaning less financial impact on other national services (e.g. medical).
Even now, when I have the freedom of this budget, there is always the underlying worry that political changes may mean it is taken away. Without this budget, it would not be long before I was financially unable to live independently and would probably have to consider living in an institution. This is unthinkable not only for me but also for my family and close friends. My physical and mental health would deteriorate and – for many other practical reasons – I would also be much less able to work and contribute to society as a whole. Everyone, including persons with disabilities, should have the freedom to choose where and with whom they live. In my situation, this has meant having access to, and complete autonomy over, a budget to employ personal assistants. Other people may have different priorities, but the important point is autonomy and freedom of choice in everything that we do.
Insufficient support to cover personal assistance costs
Anonymous from Spain who is a power wheelchair user
In order for me to live independently, I need a personal assistant almost 24/7. For this reason, I need to hire not only one but at least three personal assistants in order to have assistance all seven days of the week. In my country, Spain, the government only provides two to three hours a day (Monday to Friday, not weekends) of assistance for my level of disability, which is the highest in the scale used by the Government. Thus, people with disabilities need to pay for the remaining hours of assistance they need by themselves. This is very difficult since it is already difficult for a disabled person to find a job in my country, it is almost impossible to find a well-paid job that allows you to pay for your personal assistants.
In my case, I use most of my income to pay for a small part of the expenses of personal assistance and my parents help me paying the rest of the cost. This is however an unsustainable situation in the long run. I am hoping that in the future the government puts in place a higher number of hours per day of personal assistance, which will hopefully meet the amount of hours we need.
Anonymous from Italy who is quadriplegic
I began my independent living experience in 2003 when I was 33 and I had the opportunity to hire my first personal assistant thanks to a financial contribution made available by the Piedmont Region and the Municipality of Asti. Subsequently, in 2010, I was able to definitively leave home to rent an apartment that was accessible from the point of view of architectural barriers and live independently with my personal assistant who I take on in full responsibility. From 2003 to today I have had 12 different personal assistants who have alternated and still alternate for my assistance. My economic condition is based on an old-age pension matured through twenty years of work in the public administration, an accompanying allowance and a contribution for independent life paid by the Municipality of Asti which, unfortunately, over the years has been progressively reduced in resources. Currently this economic contribution is not sufficient to support the expenses for my assistance and, therefore, they must integrate with their own resources.
The major problems that we encounter in our territory in this period concerning independent living are linked to the progressive impoverishment from an economic point of view, but also from an ideological point of view and the values that underlie independent living as an individual, responsible and self-managed choice. More and more frequently, in fact, those in charge prefer to adopt welfare strategies rather than facilitate paths towards self-determination.
Barriers to freedom of movement throughout the European Union
My multiple sclerosis was diagnosed in 2010 and since then our life has been a constant struggle in the absence of any kind of support including social assistance from our country of origin (France) and our country of residence (Slovenia). As a result, we have a situation of “non existence” in both countries. I am therefore deprived of all kinds of resources that could facilitate independent living. I am registered at the Slovenian Employment Agency which has recognised my disability, but have no access to any work due to my disability, my age and not speaking Slovenian. On its side, France acknowledges my status of disabled worker but without any financial assistance as a French citizen living abroad. In conclusion, my husband who assists me strongly in my daily life and myself we are totally deprived of any help and financial support.
Building the Independent Living movement
Kamil from Greece who has Spinal Muscular Atrophy
Until a few years ago, terms like Independent Living, Personal Assistance and Deinstitutionalisation were mostly unknown to the Greek government and the traditional disability movement, and even if they knew them, it seemed that they were not among their priorities. The prevalence of the medical model of disability in the Greek society (even among disabled people) played an important role too. Personally, I didn’t feel represented, as my impression was that no one fought for Independent Living much, nor provided us with the tools to do so. International developments (like the UN CRPD, which is signed and ratified by our country), the emerging of a new generation of disabled activists and organisations, who had access to internet and thus to the international independent living movement, the coalitions we made, and the general demand of societies for human rights and inclusion of the oppressed, brought this discussion to Greece too, with more and more people addressing these issues.
At the end of the 2014, together with 5 other disabled people, we co-founded i-living, the first and only Independent Living organisation in Greece, after joining the ENIL Freedom Drive 2013 and learning about the IL philosophy. We realized that in Greece almost no one knew or talked about these things, so we decided to act. The result? Today we are discussing officially with the government and other stakeholders about things like PA and DI, which they committed to implement. This is a historic opportunity for the country, to the right direction, but there are still many challenges and dangers to take into account, so we need to be careful and on guard. Until then, the lucky ones will continue to stay with families, and the unlucky ones in institutions.
Small actions to help facilitate independent living
Ines from Croatia who is visually impaired
My independent living started in 2010 when I entered the student dorm in the Croatian capital. As persons with disabilities, we had the commodity of getting the room just for ourselves. In the student restaurant that was on the premises, there was a table where we could sit and be seen by the employees who would come and read the menu aloud, we would choose and they would bring us food and take the dishes away afterwards. For my Master’s studies, I lived in two dorms in Trieste, Italy. There, as a part of the University, a service of accompaniment was provided by students as a student job. They could accompany you to the student restaurant or classrooms, to go shopping or help with study or the digital adaptation of reading materials. In Madrid, for my traineeship and my first job, I lived in flats with roommates, I went shopping with them or I used Amazon food delivery. The metro and transport in general is very accessible, I could go to unknown parts by myself without any fears of getting lost or falling somewhere.
Currently I’m living alone in a flat in Zagreb. I use food delivery and I go to the supermarket where I have learned the ‘spots’ of the food and beverage that I usually buy, and I have drawn the attention of the employees to my occasional presence as a visually impaired client who could maybe sometimes need help. The transport could be better. Sometimes the device that speaks the names of the bus or tram stations aloud works and sometimes not.