tag:blogger.com,1999:blog-447392662850613354.post1065891996078369193..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: This parent's essay didn't sit right with meBLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-447392662850613354.post-11897841050660749122017-12-01T10:02:24.584-05:002017-12-01T10:02:24.584-05:00This piece didn't sit well with me either. Ul...This piece didn't sit well with me either. Ultimately it's this boys decision as to whether or not his life was worth living. It's really strange and disturbing that another person--even a parent--feels that they can make that judgement. At a minimum, as you note, she should be listening to other people with CF. Imagine what it will be like for this boy to read that column?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-62698622639083767152017-11-30T10:17:40.910-05:002017-11-30T10:17:40.910-05:00I agree - this blog is an opinion piece. I read t...I agree - this blog is an opinion piece. I read the article too, and while I'm sure the author also felt it was her opinion piece and she did not have to present alternate viewpoints, it would have benefited from them. I recently heard an interview o the CBC with a Podcaster with CP that was truly inspirational - his outlook about his disease was realistic but still very affirming - see http://www.cbc.ca/cbcdocspov/features/how-having-cystic-fibrosis-inspired-these-four-people-to-give-backAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-83027391454956083092017-11-29T03:08:39.888-05:002017-11-29T03:08:39.888-05:00Bloom I read that article and as a mother to a son...Bloom I read that article and as a mother to a son with a rare genetic condition that wasn't picked up I actually couldn't finish ready the conversation she had, it didn't sit with me either. She spoke about her child with c.f. as an object and not a person. Too upsetting. Thanks for sharing your views. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-13201641865949284572017-11-28T17:32:47.075-05:002017-11-28T17:32:47.075-05:00Dear Anonymous:
Thanks for writing. This is an op...Dear Anonymous:<br /><br />Thanks for writing. This is an opinion piece that I wrote as BLOOM editor. It is my opinion. These are not hospital positions,as our disclaimer outlines.<br /><br />I did not feel the piece was balanced in the way that a piece of journalism should be. I don't believe it's appropriate to refer to having a child with a disability or cystic fibrosis as a "life sentence" for parents, or to refer to parents who choose not to terminate pregnancies as choosing their child's suffering. Disability, and prenatal testing, is complex for the people involved. I expect reporting on the topics to be equally complex and include a number of voices, including those of people with disabilities.BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-42868846955779647482017-11-28T17:23:13.002-05:002017-11-28T17:23:13.002-05:00Is Holland Bloorview against prenatal genetic test...Is Holland Bloorview against prenatal genetic testing? Ending pregnancies affected with a serious disease? That is the sense I get from this blog. It is shaming to those of us who are carriers and would choose to have such testing to avoid bringing a child into a life of pain and suffering. Not all diseases are the same but this blog seems to think that all genetic testing is wrong. I have seen it again and again and I am going to stop reading here.Anonymousnoreply@blogger.com