Through the research for Real Challenge -competition we learned a lot about how Nordic societies relate to the independent living of the elderly and disabled. How we view independence, disabilities and ageing is deeply rooted in the Nordic version of Western culture. It’s important to consider these views since our societies are inevitably changing with the shift in the population structure. As the change unfolds our culture needs to somehow adapt – we urgently need to address the questions of what is good care in the age of scarce resources, what is good elderly life, how do we take care of each other?
Some of the insights I found most fundamental for framing the challenge of independent living in the future are:
Independence is not just about being able to stay in your home, but also having the possibility to leave your home
Municipalities tend to measure independent living as the share of elderly and disabled living in public care institutions against the share of those living in their own apartments. Usually it’s cheaper if people live in their own apartments and most people wish to live at home as long as possible. Yet, when considering what living at home means we shouldn’t focus too much on the place of residence. Being able to stay alive in a specific apartment is a really insufficient definition of independent living.
Retired people emphasize the importance of staying active and maintaining curiosity and inquisitiveness. A concrete way of doing this is leaving your house and going out every day. Staying inside makes you passive. When forced to stay indoors for long periods we easily experience a growing mental barrier for going out. For example, staying indoors for weeks after a hip surgery will probably make you see going out as a set of risks – you might fall, get robbed, not have enough money on your bus card.
Staying at home makes your world small. Home is essentially a place you come back to – if you’re never leaving and coming back, is it really a home?
Independence is about being recognized and having control
Instead of home vs. institution, a more accurate juxtaposition is independent living vs. institutionalized living.
You can be institutionalized in your home. You may have little to no control over your routines, which are set by institutions. You’ll get out of bed when the home nurse appears in the morning. You’ll wait for the food delivery to arrive in the afternoon. You’ll wait for someone to take you to bathroom. You’ll wait for someone to put you to bed in the evening. You don’t decide when these things happen and how long you wait. You don’t decide the food you have. You don’t decide the people who come to your home. You have no influence over the fact that they are hurried, stressed and late.
Institutions define your needs. Then they set your routines by answering the needs in ways that are efficient according to the spreadsheet.
People fight in order to get some control over their daily routines. They request the personnel they have a good relationship with. They try to give feedback. They call and ask for the timetables. They complain about the changes that ruined their meals after the latest procurement round. The lucky ones get more help from their children, find a great voluntary service or happen to have the best neighbors ever.
Many get frustrated when they lose control of their own use of time. People talk over your head about your issues like you’re unable to understand anything. You come from the health center and they give your papers to the taxi driver like you were some idiot. Our societies only see the “fully functional productive members” as the decision-makers. When we lose some physical abilities, we also tend to lose many possibilities to take decisions. If institutions control your needs and routines and your opportunities to take decisions diminish, can you really be independent?
Cure often overshadows care, but for a good life we need both
Medical treatment is at the core of our healthcare systems. It aims at curing people by treating the symptoms of sickness and disease. Cure focuses on fixing problems and treats a human being as an object with a body. The role of the person being cured is to passively follow the recommendations and rules set by the professionals treating them.
Care on the other hand is not a goal-oriented activity of the professionals with special knowledge. Care is teamwork in which the role of the patient and their social network is active and important. It is about making the best possible life with the disease or problem and what the best possible life is may differ between lives. It calls for an attentive process of exchanging experiences, sharing knowledge and suggestions. Treatment is not just prescribed, but it’s decided upon together. When decisions are based on two-way communication, the communication itself helps make lives better.
Medical professionalism is important for health care, but taking care and making the best possible life with health problems and disabilities is about much more. It’s not the same for all lives, which makes it difficult to measure and standardize. On the other hand it seems to be well acknowledged fact of Western culture that living a good life is not easy.
Our culture is too obsessed with living to care enough about dying
Death is hidden somewhere in the backyard of our societies. It has been handed over to the professionals. It happens in clinical spaces. It’s rarely present in the public discussion. We are so busy on trying to perform our lives that we forget they’re ending. We have thousands of self-help books on how to live a good life, but none that would tell us how to die well. Discussions of dying well are a taboo in our society. There are tv-shows about euthanasia, but no chance to actually put it on the political agenda. And that’s just one topic around the theme of good death and our independence in facing it.
Most of the entries in the challenge competition will most likely focus on solving really practical challenges, but we also have deeply rooted cultural challenges around the theme of independent living. At best, concrete creative solutions serve as Trojan horses which also subtly smuggle changes into our culture.