Markus’ Mom: The Fight for Disability Rights in Sweden
Representing: H, E & R (Health, Economic Empowerment & Representation) in the H.E.R.S Framework
Day 9 of #16DaysOfGlobal — Today we share a personal story by Lotta, a ReSister and the chapter lead of Women’s March Stockholm. December 3rd is the International Day of Persons with Disabilities and Lotta shares her thoughts in regards to the fight for advocating for the rights of Markus — her son.
__________________
I have a son who is mentally and physically disabled. I am his caretaker..
Someone needs to have my son’s interest at heart. Being disabled means that in you need to have a voice. But if, like my son, you can’t speak, who will make sure that your human rights are met? Try to get around by subway or buses. Go to the hospital in a wheelchair and talk with the doctor without having people talking over your head. Try to look at all those beautiful pictures on social media blindfolded.
There is so much in our daily world that we non-disabled people don’t realise. So what can we do to help? Well the first step is to look around. “What if it was me in a wheelchair, what if I could not see the crosswalk or stop sign, what if I couldn’t get in a car or regular cab”? While many of us go on with our daily routine, there are many people who cannot participate in daily life due to disabilities.
In Sweden we have a law that has been in effect since 1992. It allows anyone qualified to have a personal assistant. If you need help with personal care, or taking care of your family, or you need assistance with personal hygiene, cooking, and all the little everyday stuff we don’t even think about, you have the right to a personal assistant. Someone who you know and trust who can help can give you a voice, maybe a relative, or a really good personal assistant who can speak for you. It is important that this caregiver and care-receiver have mutual respect, and the longer they stay on the job the deeper the friendship and understanding becomes. My personal experience is that the bond between the two becomes very strong, where the personal assistant really wants to fight for his or her care-receiver’s human rights and fair treatment.
The law, LSS (Act concerning Support and Service for Persons with Certain Functional Impairments) lets people with disabilities live a dignified normal life outside of an institution. People usually refer to LSS as “Get a Life”, something we say as a comment to people who should do something better with their time. LSS was implemented so many people have the right to do just that — get a life.
Now, they want to restrict personal assistants’ pay to only when they are directly helping their care-receiver. All waiting time is not a part of the paid work. Say you work for a mother and she has to change diapers, you step in and do it. Under this new law, you would get paid for the action, but as soon as you’re done you’re off schedule until you have to feed the baby or lift the baby up in to mommy’s lap. Who wants a job where you’re at work for 10 hours but only get paid for 7? So let´s get real about this. If you really want to inhibit the rights of people and save money this is a good place to start. Start with the people that are vulnerable. Lucky them if they have someone who fights for them.
LSS is being threatened as it is expensive. There are not many options left other than having people in institutions, where you leave them and just do the most necessary, bare minimum. We know how that story goes. This is a human right. Since we’re all just a heartbeat away from being in need, it´s our fight!
All over Sweden we will have demonstrations to object to the new suggested laws. We are asking all of you to fight for human rights here and in your countries. Below is a link to a petition toward the Swedish government urging them to continue to support LSS — please sign and share.
With love in solidarity
Markus’ mom
__________________
Action: Sign the petition
Join Women’s March Stockholm on Facebook.
