https://www.meassociation.org.uk/20...i-feinted-in-the-house-of-lords-08-july-2019/ There was an article in the Times yesterday which I missed but sections of it are included in the above link. Briefly the Baroness fainted three weeks ago in the H of L. She has been diagnosed with EDS after being ill since the age of 7 and having a series of diagnoses including cfs/ME. Only her family knew of her ill health. She has recently been rediagnosed with EDS and has given an interview about this. Until she had the diagnosis of EDS, she had always felt like a “ hypochondriac”. Dr Shepherd has just added a section about EDS to the above link.
Points for Baroness Blackwood for determination and managing her conditions/illnesses. And for her plans to help others with rare diseases. However, unlike most with these conditions, she likely has the best of the best for medical care, as well as help at home. Money doesn't look like it's a huge problem. Contrast that with never-ending, debilitating illness, grinding poverty, stigma, disbelief and mistreatment from some in the medical community, friends and family. Different story. At least on the face of it, Baroness Blackwood's story looks different from many others' lives who are shredded and turned upside down by little understood, neglected, and dismissed illnesses. Governments sometimes hold up high achieving disabled people as an example - if they can do it you can too. It would be interesting to see how many of those people accomplished everything on their own without a support network, and substantial economic help.
I don't know anything about Baroness Blackwood's financial situation. ''Members of the House of Lords are not salaried. They can opt to receive a £305 per day attendance allowance, plus travel expenses and subsidised restaurant facilities. Peers may also choose to receive a reduced attendance allowance of £150 per day instead.''
Yes, @Trish, we don't know anything about Baroness Blackwood's financial situation. However, on the face of it, it looks better than many who have been disabled for years, and not really even scrimping by on welfare. And, it appears there may be family support of the emotional, validating type. I have seen governments in Canada place high achieving disabled people as Ministers in departments such as health and welfare. One of the messages seems to be, if the Minister can accomplish all this, you can too - so why are you not at least out there working?
I agree, @DokaGirl that her situation is better than a lot of us, but given that so many of us are too sick to work, it's surely better to employ some who can work who has some relevant experiences to try to represent us than the usual career politician with no clue about disability.
@Trish, I agree. My first instinct was to say great, someone to represent us, and we do desperately need them! But then my cynical side kicked in about the more subtle, or not so subtle messages we sometimes get - if that disabled person can be a high achiever, why can't you? Years ago I met a disabled person working for government who was vociferous in insisting everyone can work. There was no room in this person's thinking for systemic disease that really incapacitates a person. This person's disability was not systemic, as in a disease type disability. My feeling is on the face of it, this situation looks good for persons with disabilities to become more understood, and maybe receive meaningful assistance, disease research etc. On the other hand, I have seen what has happened elsewhere, and the lack of understanding from disabled Minister's and their departments.
I think it said in the article that the Baroness’s father was a cardiologist. She was home educated because of her health and then went to Oxford. Apart from her health it sounds a privileged life. What struck me was that initially she felt a hypochondriac and her health issues were kept within a small circle, but the EDS diagnosis seemed to change all that. There is an interview in the Times. Well I was diagnosed 3 weeks ago by a geneticist with h( EDS) but I don’t feel anything has changed because I still have ME with severe pem. Also as well as hypermobility I have systemic issues from EDS that are serious. It felt to me as if ME was being dismissed again, that it is seen as hypochondriacal. I so wish someone famous or influential would acknowledge having ME, and its difficulties. “Nevertheless, she says she couldn’t live with herself if she didn’t try to make it easier for patients with rare diseases to get an early diagnosis and help to create a care system that is easier to navigate.“( quote from Baroness Blackwood). I wonder if she is someone to approach about ME. We fit all her criteria in that quote apart from being rare.
I do not wish to be too harsh on Baroness Blackwood, but I was disappointed that she saw fit to sign this (standardised) letter from the DHSC. https://twitter.com/user/status/1101268789793120258 https://twitter.com/user/status/1101268792435490816 I'm not sure there is anything to be gained by criticising the Baroness on social media but I am hopeful that people like Charles, Margaret Mar, Carol Monaghan and others may be able to reach out to her through other channels, make her more aware of the issues, and hopefully bring her on side. She could be a useful ally.
Agreed. And we must not fall into the trap of taking a negative view of someone simply because they may be well-to-do.
How Baroness Blackwood of North Oxford voted on Social Issues # Voted against equal gay rights Show votes 0 votes for, 1 vote against, 6 absences, between 2013–2014 Generally voted for smoking bans Show votes 2 votes for, 0 votes against, 2 absences, between 2010–2015 Voted against allowing marriage between two people of same sex Show votes 0 votes for, 1 vote against, 5 absences, between 2013–2014 Voted a mixture of for and against laws to promote equality and human rights Show votes 2 votes for, 4 votes against, 5 absences, between 2011–2016 Voted against allowing terminally ill people to be given assistance to end their life How Baroness Blackwood of North Oxford voted on Welfare and Benefits # Generally voted for reducing housing benefit for social tenants deemed to have excess bedrooms (which Labour describe as the "bedroom tax") Show votes 11 votes for, 0 votes against, 6 absences, between 2012–2014 Consistently voted against raising welfare benefits at least in line with prices Show votes 0 votes for, 5 votes against, in 2013 Consistently voted against paying higher benefits over longer periods for those unable to work due to illness or disability Show votes 0 votes for, 15 votes against, between 2011–2016 Almost always voted for making local councils responsible for helping those in financial need afford their council tax and reducing the amount spent on such support Show votes 3 votes for, 0 votes against, 1 absence, in 2012 Almost always voted for a reduction in spending on welfare benefits Show votes 47 votes for, 0 votes against, 7 absences, between 2012–2016 Generally voted against spending public money to create guaranteed jobs for young people who have spent a long time unemployed Show votes 0 votes for, 4 votes against, 5 absences, between 2011–2014 https://www.theyworkforyou.com/peer/24842/baroness_blackwood_of_north_oxford/votes
@Barry, my post was not about being against someone because they are well-to-do, but was just pointing out that with much assistance some with disability can accomplish a lot more. For many who are disabled, their finances take a big hit. Hiring others to do everyday tasks is often not possible. Even basic everyday tasks go by the wayside with diseases like ME. In this situation, accomplishing loftier goals is extremely difficult to impossible. With financial help more can be done; higher goals can be reached. However, these advantages may be overlooked by those who say to pwME, (e.g. the BPS crowd) full recovery is within your grasp. Just get out there and do it.
