tag:blogger.com,1999:blog-1489173439865061632.post207553958384506840..comments2024-03-21T07:04:24.033-04:00Comments on THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: Just Breathing vs A Good LifeAnonymoushttp://www.blogger.com/profile/11368028391616959419noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-1489173439865061632.post-90070842914676567252013-06-02T09:50:39.087-04:002013-06-02T09:50:39.087-04:00Thank you for your comment - language is a startin...Thank you for your comment - language is a starting point, but wholesale change will only come with a massive values shift in the giving and receiving of care across generations. The over-valuing of independence (instead of the more realistic and worthy goal of inter-dependence) has got our society into real trouble. I am hoping that we will come around to see the value in creating whole government approaches to supporting family and community care. By whole government approach, I mean taxation, caregiver friendly immigration policies, wheelchair accessibility, community programming with family caregivers in mind, etc. etc. Every person with a care requirement and every caregiver will have personal aspirations that are unique to their situation. That's why I champion the idea of 'most supportive/least restrictive' as an ethic for change moving forward. That's also why I believe that all people who are currently giving or receiving care need to come together as a political force for change. No more silos pitting one group against another (eg seniors vs disability)!The Caregivers' Living Roomhttps://www.blogger.com/profile/10920119448415733545noreply@blogger.comtag:blogger.com,1999:blog-1489173439865061632.post-91288997299497354612013-06-01T19:48:21.040-04:002013-06-01T19:48:21.040-04:00Changing language is not enough. People with devel...Changing language is not enough. People with developmental disabilities (DD) have gotten into that -- activism around getting rid of the "R" word -- but it really doesn't change their lives. Too many people still see someone with Down syndrome, e.g., and think of them as "retarded". And, the DD field has used the term "support" and called frontline staff "direct support professionals" rather than caregivers for some time now, but does any of the new vocabulary really change how people think, feel, act and receive people who are (highly) stigmatized? Stigma applies to homebound elders as well.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1489173439865061632.post-50082467797791899082013-05-29T19:59:44.188-04:002013-05-29T19:59:44.188-04:00Oh Roger, you are right, if course. This is about...Oh Roger, you are right, if course. This is about support and Sarah Schulman's underlines your point - she also speaks about developing a new language of 'support' - I am the guilty party in using the old vernacular simply because I'm used to it. But you are right, there is power and meaning in language. Today, I read another friend's blog who referred to her son's 'carers' as 'associates' - I loved that! We must find a new language to reflect a new conversation and a new power relationship between the individual, the family, the 'associate', the government and the taxpayer. The Caregivers' Living Roomhttps://www.blogger.com/profile/10920119448415733545noreply@blogger.comtag:blogger.com,1999:blog-1489173439865061632.post-63520267485967000912013-05-29T19:51:51.054-04:002013-05-29T19:51:51.054-04:00I believe that one of the fundamental problems is ...I believe that one of the fundamental problems is this whole concept of "care". In my opinion, as long as we continue to talk about caregivers and care, there is an assumption that we are simply maintaining someone and not supporting them in their lives. After 28 years of living with a "disability", the greatest obstacle I face usually has to do with someone who thinks that they need to care for me. The government wants to care for me, the medical profession wants to care for me, even family and friends want to care for me. I would much prefer if you CARE ABOUT ME, in the same way that you would for anyone else. In a strange sense I am saying that we need to take away the care, if we really care.<br />Roger B Jones<br />"The Ability Guy"Anonymoushttps://www.blogger.com/profile/09448718657054681488noreply@blogger.com