mango
Senior Member (Voting Rights)
I think it's really important to remember that without the advocacy that has been done, we might have been in an even worse situation than we currently are.
Successful advocacy isn't just about affecting change that moves us forward, it's equally important (if not more) to make sure things aren't sliding backwards. The fact that we aren't seeing substantial improvements doesn't necessarily mean that the advocacy hasn't been successful.
For example, campaigning for more ME centers to open is really important, but it's just as important (if not more) to try and make sure the existing ones aren't closed down.
That kind of work isn't very "glamorous", though. People who dedicate themselves to that kind of advocacy rarely get the appreciation they deserve. It's not the kind of work that creates headlines, not the kind of wins that are celebrated on social media.
Based on discussions on social media and Swedish ME groups on Facebook in particular, my impression is that pwME in general tend to take the permanence of progress and wins for granted, in that they don't realise/believe that things we have "won" can be lost again. Sadly, in reality progress is much more fragile than that...
Personally, I feel that we have been sliding backwards in Sweden for a number of years now. But that doesn't mean that the advocacy work that has been done has been meaningless or that it has "failed". To me it just signals that we would have been even worse off today if no work had been done to try and push back against that trajectory.
Successful advocacy isn't just about affecting change that moves us forward, it's equally important (if not more) to make sure things aren't sliding backwards. The fact that we aren't seeing substantial improvements doesn't necessarily mean that the advocacy hasn't been successful.
For example, campaigning for more ME centers to open is really important, but it's just as important (if not more) to try and make sure the existing ones aren't closed down.
That kind of work isn't very "glamorous", though. People who dedicate themselves to that kind of advocacy rarely get the appreciation they deserve. It's not the kind of work that creates headlines, not the kind of wins that are celebrated on social media.
Based on discussions on social media and Swedish ME groups on Facebook in particular, my impression is that pwME in general tend to take the permanence of progress and wins for granted, in that they don't realise/believe that things we have "won" can be lost again. Sadly, in reality progress is much more fragile than that...
Personally, I feel that we have been sliding backwards in Sweden for a number of years now. But that doesn't mean that the advocacy work that has been done has been meaningless or that it has "failed". To me it just signals that we would have been even worse off today if no work had been done to try and push back against that trajectory.
