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Do any other disabled people feel the same way about lockdown as my daughter?

JenFJenF Member Posts: 9 Listener
edited February 16 in Disabled people
Hello
The 'letter' below was written by my daughter, explaining that she feels that lockdown is terribly unfair on disabled people who are not vulnerable to Covid, as nobody would do one tenth for them as they are being asked to do for the wider community.

 

Hello,

I’m writing to draw your attention to an issue regarding disability and lockdown, which doesn’t seem to be part of the debate, and which I think is significant. 

That is, if what is considered ‘reasonable adjustment’ for people with disabilities under ordinary circumstances is compared with the complete suspension of normal freedom in order to assist those vulnerable to COVID-19, an extreme lack of parity emerges.

COVID-19 is a real and serious problem, but what is being required of someone like myself goes way beyond anything others are required to do when I am the one in need and they are the one losing some freedom or having to go to some trouble.  I am used to accepting that it is only fair to ask so much of others, but that acceptance ought to go both ways, and it does not seem to.

What I mean is this.  I am personally at no more risk from COVID-19 than from flu (i.e. negligible risk of any sort).  As someone living alone and unable to work (Ehlers-Danlos Syndrome plus some of the co-morbidities), I have been deprived of almost all meaningful activities, most of my medical care, and most of my freedom by lockdown.  This has put me in a state of life-threatening clinical depression, which is getting worse the longer the situation goes on.  Things like bubbles and exceptions for carers, though helpful, are not sufficient.  The policy of lockdown, which is doing me so much damage, is considered by legislators to be justified on the grounds that it is put in place in order to help and protect those who are at significant risk of dying if they get the disease – so people at high risk won’t catch COVID, and so they will all have access to intensive medical treatment if they need it.

However, I have spent my life needing and asking for adjustments to live and function.  People are by law obliged to make reasonable adjustments.  These are comparatively minor things like wheelchair ramps, large print, and allowing admission of guide dogs.  In practice, these things often don’t happen, and they are frequently massively resented. 

Imagine the response if a person with a disability – perhaps someone with anaphylaxis problems or someone severely immune-compromised – said, “I’m entitled to reasonable adjustments – you’ll have to spend 13+ weeks alone at home, and work entirely from home for a year, in order not to put my life at risk.”

They would be lucky if they were merely laughed at and not condemned as irredeemably selfish.  What was being asked of the other person, the restriction on their freedom, would be considered completely unreasonable.

Yet this is exactly what has been done by lockdown, in order to protect a different group of vulnerable people.

If preventing risk to life was usually considered more important than anything else, peanuts and other severe allergens would not be legal.  Nor would a lot of other things.

When it is us, “the disabled,” who ask for things, other people’s freedom and right not to have demands made of them is very quickly more important, irrespective of the level of our need.

On the other hand, when it is the people who are vulnerable to COVID-19 who are seen to need something, their vulnerabilities matter more, and any freedom can be taken from others for their sake, even to the extent of placing us in a life-threatening condition of health.

This is not fair, and it is extremely dehumanising.  What is a reasonable adjustment for disability under normal circumstances, is a reasonable adjustment for COVID-19, and vice versa.  People who are not prepared so much as to let me bring a suitable chair, and get annoyed with me for sitting on the floor, should not now be requiring of me that I give up everything important because they are in need.  My choosing to do it might be highly commendable, but it is extremely unjust that it should be demanded.

Moreover, I have had quite a few medical professionals make it quite clear to me that I am not considered worth the medical resources I am taking up – medical resources I have seriously needed are simply not there, and that is considered fine – and yet, when it is a different group of people who need medical resources, policies are actively followed which are known to damage the health of people like myself, in order to make sure they get them.  Again, this is not fair.

Are there other people who feel these things are a significant injustice, particularly the issues surrounding what constitutes ‘reasonable adjustment’?  Might this be something you would be willing to take up and try to make part of the discussion?


 


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Replies

  • [Deleted User][Deleted User] Posts: 1,651 Listener
    Don't get me started mate, I'm already in a bad mood due to something that happened this afternoon.


  • GeoarkGeoark Member, Scope Volunteer Posts: 1,376 Disability Gamechanger
    Hi JenF

    First of all I have every sympathy for your daughter, and hope she is able to get help with her depression soon. 

    There are two main reasons for lock down, neither of which has to do with protecting the vulnerable. Rather this is used as an argument to encourage compliance.

    The first is to do with protecting the NHS. Unchecked this would have easily have overwhelmed the NHS and we would be in a lot worse state. Whilst there are a lot of normal services that have been severely reduced these services are still there and will be needed once we get past this current crisis. It should also be remembered that part of the reason why we needed the second lock down was because too many people would not follow the guidance. It is because the death rates and consequently the pressures on the NHS that Boris Johnson is considering easing the lockdown.

    The second reason is while the pandemic is running wild variants will develop. Yes statistically those considered vulnerable are more susceptible, but there is a good chance a variant that does affect less vulnerable people will develop. The more we can do to reduce the virus the less chance that this will happen.

    I am not considered vulnerable even though I have been diagnosed as having both asthma and COPD. For these reasons I have chosen to self isolate, and while for the majority of the time this has not been a great hardship as I have been able to work from home it has not been without its consequences. For example, prior to Christmas I was starting to hear voices and was starting to have hallucinations. The break at Christmas was a welcome relief from the stresses from work, which during normal times where I would have people to talk to it has not been so easy during the last year. 

    What concerns me most though is the attitude which has been shown to your daughter by some so called professionals regarding her worth for treatment.

    From my experiences at both local and national levels that many smaller charities and non profit organisations exist because of the efforts of people with disabilities, considered unfit for work and less likely to get jobs. Nor should their contribution to the wider economy be ignored. As an individual I am certain your daughter has a great deal to offer in the future. It may not be ground breaking or newsworthy but it could be significant to other people in ways she cannot imagine. Very few people live in total isolation from everyone else around them. Sometimes something really small, and may seem trivial at the time can have a huge impact on others in ways we often do not imagine.

    While I may disagree with the premises of your daughter's arguments, what I would say is that I found her writing compelling to read and does make some very compelling arguments for and shows the lack of understanding in general to the needs of disabled people, let alone the more complicated needs.

    I wish her well and hope you she gets help with her depression soon.


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • JenFJenF Member Posts: 9 Listener
    Can I take that as a yes, MrAllen?
    Thank you for your carefully thought out response, Geoark. My daughter's main thrust was to show how little care and understanding is given to disabled people. She had unfortunately just moved before lockdown began and therefore had no chance to get to know the neighbours. Similarly, she was about to start some voluntary work which was then cancelled. She has only had an accurate diagnosis of her condition for a few months, during which only part of the care she needed was delivered. She needs bracing and she needs physiotherapy, both of which have been cancelled indefinitely.
    Now if she had had good care before - if the NHS had been 'there for her', she would not now feel so devastated by the lockdown. 
    I agree, since she has been disabled all her life and in need of mental health services since she was 8 (due to teacher bullying), this is very concerning indeed. My perception is that she was failed in two areas - firstly by the GPs we had when she was a child. It's only since she has moved away and therefore to another practice that she's had a GP who has believed in her problems. Before that, all her physical symptoms were dismissed as psychosomatic. And  even then, it was only by luck that a locum spotted the probable underlying diagnosis - since confirmed by specialists. 
    Secondly, we were badly let down by the child mental health in our area, which was run by two women who were in that field of medicine because it allowed them to take school holidays off. Since I know of another depressed and ill young woman who has been told that she's not ill enough to be treated, even though she's on large doses of anti-depressant drugs and unable to work or do much else either as a result, I fear this may be a common experience.
  • Richard_ScopeRichard_Scope Posts: 2,871

    Scope community team

    It is a common experience. Sadly, disabled people whose conditions might be visible or invisible are third-class citizens in our society and around the world too. This is what we rail against daily. Lockdown has distilled the problem.
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  • GeoarkGeoark Member, Scope Volunteer Posts: 1,376 Disability Gamechanger
    @JenF my dughter has a different diagnosis, but the similarity in the stories are shocking.

    I had a good relationship with my daughter's first primary school and even volunteered in one of the classrooms. Then went in to pick her up one afternoon and her teacher and the head teacher made a bee line for me and I was told straight unless my daughter apologised to her teacher she would be expelled. I asked me daughter what happened, in front of them, and she told me her teacher had said that everything we eat turns to blood. She tried to correct the teacher and was told to shut up so called the teacher stupid. The teacher tried to defend herself by saying she was talking about animals, and my daughter knew this was wrong. After this things went down hill and in the end I put in a formal complaint. The response was if I did not withdraw it the teacher would take me to court with the schools support and the union. I called a friend in front of them and asked if he would like to run the story if I was taken to court, and having spoken to him about our recent experiences was aware of what was going on. Not sure why, but they backed down. When the new school finally saw the copy of her end of year report, which we provided as the old school would not, I was told not to worry as they would be making a formal complaint. 

    Her eventual diagnosis was again stumbled across. It was in her last year at primary school and there was a staff meeting to discuss which students would need extra support. One of the staff was looking outside where the children were on a break watching my daughter and raised the question if she would need extra support. Educationally very bright, articulate yet something was not right. As the teachers compared stories the SENCO decided to talk to the school educational psychologist who straight away identified she could well have Aspergers. 

    While overall her secondary school was really good it did seem that we were regularly fighting the same battles. Towards the end of one meeting I got so exasperated with two members of staff I told them straight that I didn't care what their personal differences were I expected them to at least act professionally and do what was best for my daughter and other students, then added if I had to I would go back in and bash their heads together until they got the message. Fortunately I had a real good relationship with both of them and things did improve.

    I do feel for your daughter though, this really could not have happened at a worse time for her. I am going to ask a sensitive and personal question, so please don't answer. Is your daughter likely to try and take her life or harm herself? If the answer is yes then please speak to either a member of staff here - their names are followed by _Scope, so for example Richard_Scope alternative please give the helpline a call 0808 800 3333 The calls are free and they are open seven days a week, opening times are at the bottom of this page. They will be more than happy to try and support you and your daughter and may well be able to signpost resources to help. Sometimes just having someone to speak to who will not be judgmental and understand what you are both going through can in itself be a relief.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • woodbinewoodbine Community Co-Production Group Posts: 5,003 Disability Gamechanger
    Don't get me started mate, I'm already in a bad mood due to something that happened this afternoon.


    Hardly a supportive or understanding answer is it really @MrAllen1976 ?

    i think young people have had a bad deal during this pandemic and young disabled people have fared even worse, i'm not sure what the answer is if i'm honest but I do understand how many people feel so badly let down.
    I will now only offer benefits advice on PIP, and specific benefits advice for other people with Epilepsy. 
  • Tori_ScopeTori_Scope Posts: 5,566

    Scope community team

    That's a really powerful letter @JenF. Unfortunately, a lot of disabled people do feel the same. Is she going to publish the letter anywhere else? 

    I understand that negative experiences with mental health professionals in the past can really put you off seeking further treatment, but is your daughter accessing any support at the moment? I'm glad her new GP is more understanding.
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  • JenFJenF Member Posts: 9 Listener
    Hello, thank you for your concern and support, everyone. Sorry to hear that your daughter has had a rough time in education, Geoark.  I have a growing feeling that many disabled youngsters have been badly treated in education. Some teachers have a really bad attitude to disability, and most are not trained to deal with it, which obviously doesn't help. A friend doing PGCE said they gave half a day to special needs and that consisted only of pointing the students at a few books, which they did not have time to read.

    Another problem which I think is pertinent, is that many doctors seem to think that if there isn't a cure there's no point in a diagnosis. Whereas as a number of us have cause to know, correct diagnosis is very important. It helps to get help in education and in the benefit system, from social services, at work and from the NHS from physios, OTs and GPs. It also means you can contact the correct specialist charity (we've been through a few wrong ones on the way), and can do what can be done to improve your own life.

    Most of my daughter's mental health support comes from me, but she is getting more from the system now than during the first lockdown, and some of it is helpful. This is due to her splendid GP taking the time and trouble to refer and if necessary re-refer her.

    We haven't tried to publish the letter anywhere else, though we have written to her MP to draw attention to the neglect of young disabled people.

  • JenFJenF Member Posts: 9 Listener
    Tori, do you have any suggestions about where my daughter's letter might be published?
  • Jean EveleighJean Eveleigh Member Posts: 153 Pioneering
    While I appreciate what your daughter is saying as I also have EDS unfortunately she is incorrect in her thinking that she is not at risk of covid EDS is on the list of conditions that the medical officials used to inform the government - https://www.bmj.com/content/371/bmj.m3731

    I am very sorry to hear about her mental health struggles and truly hope she can find some help soon
  • JenFJenF Member Posts: 9 Listener
    Hello Jean, thank you for that, I'll check it out.
    I do think, however, that what my daughter would still wish to speak out, as what she says is still a valid point of view for everyone who is disabled and isn't at risk. 
  • Tori_ScopeTori_Scope Posts: 5,566

    Scope community team

    Hmm. Perhaps she could contact a local MP or councillor @JenF? Or a local newspaper? She could also perhaps start a blog, or start posting on social media if she doesn't already. 
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