“For me, the end of segregation means that I can be part of the community in which I live.
I can work, study, meet new people and make friends.
I am no longer invisible,
for the first time people notice me in society.
Now people can understand that I am much more than my disability.
I am Senada Halilčević, sister, daughter, friend, colleague, athlete, employee.
And every day, I try to show I can achieve everything I want.”
Living in your own place.
Making your own choices.
Being good at something.
That is what the right to live independently and to be included means to us.
Most people take these things for granted, and barely think about them.
But for a lot of people with intellectual disabilities, it’s not even a dream.
It is something that was never introduced into their life.
They live constantly overshadowed by someone else’s decisions, dependent on the will and rules of others. They must prove themselves again and again: That they can do this or that, that they can work, that they can be good parents, that they are able to make decisions…
A lot of people with intellectual disabilities are segregated in “care” institutions.
- separate people in groups, based on their disability;
- place them away from their families and friends, from others in society;
- rule over the person’s life with the institution’s procedures and rules;
- remove all the daily stuff people would usually do from the person, and replace it with group activities called therapy or activisation;
- deny the person their opportunity to experience life, to gain social skills and build relationships, to grow with age – to have a place in this world.
“Persons with intellectual disabilities and people with complex support needs are most likely to still live in institutional settings.”
A lot of people with intellectual disabilities live in a situation where they are completely dependent on their relatives for support and care.
They cannot set up their own home when adult.
They cannot decide about their own things.
This also often means that instead of being a mother, father, sister, or brother, family member becomes full-time carer, therapists, services coordinator and administrator.
Of course, there are also many people with intellectual disabilities who do live independently and who are included in their community.
Mostly people whose families have set out to prepare them for independent life in adulthood. Just as most families would do for their children.
People who have relatives, friends and organisations in their life, where they can rely on and benefit one another in all kinds of ways. Just as all other humans do.
People who use public services just as anyone else would, as the services are accessible, and the person has the means to pay for them.
People who have good disability support.
To live this way, to live independently and to be included is the right of every person with a disability.
This law that has been explained many times, often in a very good and clear way.
Politicians, public authorities, and disability service providers cannot pretend they don’t know this law, or that they don’t understand it.
Nor can they pretend they don’t know what good disability support looks like.
Still, many politicians, public authorities, and disability service providers act as if they don’t know the law, or have never heard of good disability support.
They keep forcing people into “care” institutions, giving money to these institutions, even building new ones.
They often delay the necessary change towards de-segregation with talk about “need for evidence”, or about “need to find good practice”.
Harmful nature of institutions was described in the 1960s, and countless times since.
There is plenty evidence already.
“Sometimes asking for more evidence is just another way of justifying human suffering.”
Some politicians, public authorities, and disability service providers delay this change saying they must “protect people with disabilities” and inclusion will only be possible when “society is ready”.
Others still paint this change in such an overcomplicated and unnecessarily complex way that nobody would even know where to start.
Sometimes, countries or service provides call “independent living” and “deinstitutionalisation” actions that have nothing to do with either of them.
For all these reasons, it is a good idea for the European Commission to write a “Guidance recommending to Member States improvements on independent living and inclusion in the community”:
- The document should set out actions in support of the right to live independently and be included.
- It should focus on structural reforms, to overcome the limitations of current approach based on “projects”, “pilots”, and “good practice examples”.
The document does not need to be explaining what the right to live independently and to be included means; This is clearly stated in the CRPD, and has been repeatedly explained and demanded by disability activists.
“Lack of understanding” is not the issue, lack of action is.
I think community-based living is important because we can meet other people and be part of the regular life of our communities.
We can find work more easily, live independently with the right support,
and play an active role in society.
We need inclusive communities who support us to take part.
Inclusion Europe submitted a contribution to the Guidance, which is being prepared by the European Commission.
- What we think some of the key words mean:
- Living independently and be included;
- “Care” institutions;
- Disability support.
- Actions in support of the right to live independently and to be included.
- Make public services accessible and available.
- Provide housing for people.
- Restore people’s right to decide about their life.
- Make disability support available to everyone who needs it.
- Provide tools for people to control disability support themself.
- Close bad disability services.
- Don’t wait for “society to change” or for all things to fall in place.
- Move people from harmful places and help them to set up a new life.
- Make disability support available to everyone who needs it.
- Stop putting people in “care” institutions immediately.
- Find a new home for the person moving out of an institution.
- Support the person to establish a new life.
- Close the institution. Redirect its money to disability support.
- Have a clear strategy.
- Learn from what you (and others) are doing.
- What funders need to do with their money to support living independently and being included. Funders are:
Uphold everyone’s human right to live in a home of their choice,
in a community they choose, close to the people they love!
- European Disability Strategy: The Strategy has this Guidance as one of its main initiatives.
- Survivors of institutional “care” tell their stories.
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
Being visible and vocal on issues directly affecting millions of people requires your support.
Become Inclusion Europe supporter and help us keep doing our work.