How will life be in the future?
This text is about user-controlled personal assistance and human rights for people with disabilities. A great help in life for those who need assistance and rights Swedes in the target group more or less take for granted. But now all this is floating in uncertainty. Funkas Stefan Pelc is concerned about the political development.
Stefan PelcTitle: Web Editor, Writer, Picture Editor and Training Instructor
Media increasingly reports that people with disabilities are losing their personal assistance. Some users lose a great deal of their assistance hours and some others lose all the assistance they have previously been granted. Although their disability is unchanged. The Swedish government has not changed the law, but the agency in charge of the benefits nowadays often chose to interpret predecent cases in a way that harm the users.
The reason, according to responsible politicians, is to reduce cheating and overuse of assistance. Cheating and crime should of course be prosecuted, but the truth is that the chosen method is a big failure.
Loose rules create uncertainty
For me as an assistance user, these cuts are a daunting development. I have a constant concern in my body that I can also, soon, be one of those who lose the right to user-controlled personal assistance. I need assistance and help with virtually everything, such as cooking, bringing food to the mouth, breathing (using a portable respirator), to shower, going to the toilet, dressing, ordinary housekeeping and living like everyone else at work, leisure time and while hanging out with relatives, friends and acquaintances. Even though today I have been granted assistance 24 hours a day and have a severe movement impairment, there is no guarantee that I will be granted assistance in the future.
The idea that, for example, I wouldn´t be able to continue working at Funka or being isolated in the apartment in the absence of assistance, is a thought that is chasing me. I was born in the 1960s and grew up when Sweden went from institutions where many disabled people lived and worked, to a change to more integration into the ordinary society. For my part, I escaped institutional housing, but I have nevertheless experienced isolation and a form of house arrest before the regulation on user-controlled personal assistance came into effect. That is a time I do not want to return to, it is worth remembering only for reference.
This year it is time for parliament elections in Sweden, and that makes the uncertainty even bigger. The disability movement will make assistance into an important election issue and all parties will try to present their solution to the deterioration. However, most politicians are probably waiting for proposals from a government special investigation that will present its proposals on October 1, 2018. After the elections.
Keep what we already have
Being granted personal assistance can make people with disabilities live more independently and with greater self-determination. In Sweden, we take user-controlled personal assistance more or less for granted today. In some other countries, it is still just an unattainable dream. We shall not forget that. Therefore, we will continue to fight for human rights for people with disabilities, personal assistance and accessibility.
User-controlled personal assistance make life for me and many others with disabilities more inclusive. In any case, Sweden can afford that.
However, how bad things even seem here, it is always helpful with some references to those who are worse off. I recommend you to the thoughtful documentary "Deadly Discrimination". It is deeply affecting and gives a perspective on the situation of people with disabilities in other parts of the world.
Related chronicles by Stefan Pelc
9 March 2017
Stefan Pelc, web editor at Funka, has tested a ramp that bridges many problems with accessibility in the built environment.
18 August 2015
A chronicle by Funka’s wheelchair bound Web Editor, Stefan Pelc, who shares his experiences in constructing an accessible allotment.
17 September 2013
Funka's Stefan Pelc got an exciting assignment to go to Kosovo to inspire disabled young people to try graffiti. It was a journey with many impressions and lots of spray paint.