THREAD
This is my general personal account. It will contain tweets on a wide variety of topics. (May be expended on in this thread, later). ⚠️ This account may discuss serious subjects, and this may include triggering content. (There will also be more lighthearted content 😂).
@chronicparent30
I don't think that this kind of thing should be allowed. It is ableist and shows that the school aren't making reasonable adjustments.
Also, in addition to chronic illness and disability, there are many reasons why a child may not have 100% attendance e.g. being a carer.
@ChildrensComm
I think that this target is deeply troubling. Many children can't achieve 100% attendance for a variety of reasons, including chronic illness, bereavement, disability, hospital treatment, and infectious illness, among others. To aim for 100% is ableist.
As a
#disabled
#carer
, having a cleaner has been transformative.
Personal independence payment (
#PIP
) needs an activity that recognises the difficulties that disabled people have with cleaning, tidying, and home maintenance.
@JudyMurray
I'm so sorry to read that Andy's medical details were leaked, Judy. When I heard about his condition, I thought it was through his official channels, I am sorry to read that it was not. I don't think that this should be allowed.
First and foremost, I wish Andy a full recovery.
Some people with mental illnesses/mental health conditions can't and won't be able to work even with treatment.
These people need benefits to support them.
#Question
#AskADHD
#ADHD
I read somewhere (I can't remember where) that a strength of ADHDers is that they are good in a crisis.
If you have ADHD, would you say that you are good in a crisis?
This recent push from the Conservative government to get
#disabled
people and chronically ill people into work who are currently assessed as not being able to, doesn't take into account the extra amount of time it takes some disabled people to do everyday tasks.
#Disability
Too often
#disabled
people are asked to be involved in things like focus groups and panels for no pay. This is work and needs to be paid (especially as those running the groups/panels are often paid).
I don't like these comments from
@Keir_Starmer
over the weekend that benefits and "handouts from the states" over less dignity than work.
I think that all people, regardless of their working status, have dignity and should be treated with dignity.
I've had a quick look at the
@UKLabour
manifesto. It seems to focus on getting
#disabled
people into work and doesn't offer much to those who cannot work.
It also doesn't seem to mention
#PIP
.
These changes to
#PersonalIndependencePayment
(
#PIP
) cannot be allowed to happen, as they do not recognise the full ongoing extra costs of being disabled (including being chronically ill).
As an experiment for May 2024 (and perhaps onwards), I am going to try to measure, record, and share the extra costs I face due to my disabilities.
(My aim is to show that for some
#PersonalIndependencePayment
(
#PIP
) even in its current form isn't always enough to cover the
@MrHtheteacher
My view, as a previous dog owner, is that if the dog owner can't control her dogs, they should be a lead. For me, a person's safety outranks a dog's.
I'm watching
#disabled
people struggle to get tickets to see Taylor Swift, and this highlights two issues.
- Booking accessible tickets must be made easier and available by multiple means.
- More accessible tickets need to be available. Disabled people are 15+% of the
I live in a relatively large 2-bed (council) flat with my Mum. We are both physically disabled, and the amount of accessible equipment we have fills so much flat.
I do wonder if physically disabled people should generally be entitled to an extra bedroom on the housing register.
An example of why I think the
#AskDontAssume
campaign is misguided. I use a range of mobility aids at different times depending on the situation etc., ranging from none through to a powerchair.
I don't want to have to explain to strangers why I am using a specific aid.
The maximum that someone can get on PIP is £801.71 each month (according to my calculation).
That amount often does not cover the true cost of disability.
@scope
Please can you use your platform to correct Mel Stride’s incorrect statement that PIP pays £1,000s a month? Also the voucher idea is illogical and would be completely impractical to implement, additional costs of being disabled cannot be purchased with vouchers. Thank you
I strongly dislike the term "economically inactive". I think it places a value judgement on someone's existence based on whether they are (or perhaps can) work or not.
Also, is anyone truly "economically inactive", don't most people interact with the economy in some way?
@stageyrebecca
I think that this is out of order. I also worry that it potentially endangers the safety of disabled passengers by making them the target of angry passengers.
@scottygb
The difficulty that people have is that you can choose to have Netflix or not. The TV licence is compulsory, essentially a tax.
I like the BBC and use their services a lot. I'm not 100% sure that the licence fee as it is, is the best way to fund it.
The experience of only being able to buy 1 accessible ticket and 1 "companion" ticket is far too common in the UK. It happens at almost all venues & needs to change.
#Disabled
people want to see concerts and shows with their family & friends, too
I've thought about my reaction to this.
Using the R-word in the programme title for me is unacceptable.
From what I have seen, the learning disabled/people living with intellectual disabilities community do not want to reclaim the word.
It is a slur, and it is harmful.
I agree with Pete. Many
#autistic
children and adults (including myself), who may find the lockdown especially difficult, have still managed to keep to the rules.
Seems the next stage in the Cummings defence is to invoke the 4 year old son being autistic. Don't know what the truth is but it's not good, invoking autism (which affects thousands and thousands of kids in the UK) for this behaviour.
This is a vent and long post that I am writing because it has been going around in my head since it happened, and I hope that by putting it down in writing, this will stop.
Yesterday, by an ambulance worker (who had probably met me for 15 minutes max), I was accused of being
I find the language and the policy very worrying.
Not all people with
#disabilities
and health conditions can work, and these people (people like me, and including me) need to stop being targeted by often harsh and privately run back to work schemes.
I had some pretty excellent news yesterday. I got the outcome of my
#PIP
(
#PersonalIndependencePayment
) renewal, and I have been kept at the enhanced rate for both daily living and mobility on an ongoing basis.
I've been thinking about my
#PersonalIndependencePayment
(
#PIP
) renewal. I think it is unfair and inequitable how claimants have to rush to get the form back within a deadline (or be threatened to have their benefit stopped), yet the
#DWP
can take as long as they like.
I strongly dislike the talk of just "working people" in the
#GeneralElection
campaign.
There are many people who are out of work, and these people still deserve politicians who think of them.
My experience is that sometimes informal/unpaid
#carers
are gaslit (I hope I am using that term correctly) by medical and nursing staff in hospital.
For example, I said my Mum is more confused than usual, but the nurse says they are not. Yet, I believe I know my Mum best.
My
#PIP
renewal form has a date on it of the 17th February 2023, but I only received it on 10th March 2023, and it needs to be returned by 17th March 2023!
I tried ringing for an extension on Friday, but I hung up after waiting 45 minutes. On Monday, I'm going to ring and hang
@WardrobeQuantum
@dinogoldie
It seems that even with making the disability visible (by wearing a lanyard) people still don't believe it and feel the need to police it.
I'm finding the news about this Conservative government, and
#benefit
changes difficult to process and deal with as a person on
#EmploymentAndSupportAllowance
(
#ESA
) in the support/limited capability for work-related activity (LCWRA) group.
#Disability
A commitment from me to other
#disabled
people, chronically ill people, and
#carers
.
I will do everything that I can (within the limits of my disabilities and my caring commitments) to make sure that the damaging benefit changes proposed by the
@Conservatives
don't happen.
An issue with Personal Independence Payment (PIP) a benefit that has many issues, is that it assumes that disabled people need the mobility component to either fund a powerchair/mobility scooter OR a car, when in reality lots of disabled people need both.
I am getting fed up with
#theatres
that do not enable
#accessible
and
#wheelchair
seats to be booked online.
Calling the box office is not accessible to everyone, and some theatres do enable wheelchair seats to be booked online, so why can't others?
#Disability
As a
#carer
for someone with mixed
#dementia
(
#AlzheimersDisease
and vascular
#dementia
) I think that it is important for society to recognise that it is not "just" a memory disease.
It is a cognitive disease. Symptoms like personality changes, paranoia, and depression can occur
I think that when people are assessed for
#autism
, they should also be assessed for other neurodevelopmental conditions (e.g.,
#ADHD
,
#dyspraxia
) and
#MentalHealth
conditions that commonly co-occur with autism.
My belief is that there are some
#disabled
people are unable to work. Period. Full stop.
These people need support through the benefit system.
#Budget2023
A cost of
#disability
that is often not included in the "official" extra costs of disability figures is the cost of being unemployed or underemployed due to disability and health issues.
My example is I was employed in a job earning around £21,000.00 pa. My out-of-work benefits
The PIP consultation has landed, as I have shared before and I have shared here. It has many questions. I will write a detailed response to the consultation (as a disabled person myself, campaigner, activist, advocate, and carer), and share my response when done.
Absolutely. There should be spaces on buses for 2 or even 3 wheelchairs. I think that other countries do it, so why can't the UK.
I think that as buses are replaced it should become the new standard to have multiple wheelchair spaces on buses.
I am due to have a telephone appointment (ahh!) with my mental health nurse to check a medication change today at 11.00am today. It's 11.22am now, and so far, no call. I will wait until 11.30am, and then I will stop waiting.
Patients' time has value too.
@cate_a_moore
I'm so sorry that this happened to your son. How is he feeling now? And how are you feeling now?
I feel that I can relate to your son (I am disabled and autistic, and I am on PIP).
I think that ableism like this is rife and growing in the UK.
@neurowriter
@DrJessTaylor
As a neurodivergent and mentally ill person whose life has been helped by understanding my conditions and medication (as well as other things), I thank you for taking the stand you have.
This is a genuine question(s) - Why isn't there a
#DisabilityPride
march in London (and/or disability pride marches in cities around the UK)?
What do people think about the idea of disability pride marches?
#DisabilityPrideMonth
I tell you what I am fed up with, and what keeps happening to me is organisations (of some size) not respecting my request for communication to be made via email due to my disabilities.
I ask for this at every turn, yet people still ring or ask me to call them.
I agree with this 100%.
I wonder if autistic people can ask for different ways of communicating as a reasonable adjustment under the Equality Act?
And, I thought that GPs were included in the NHS Accessible Information Standard which may cover some elements of this?
The upcoming
#Panorama
#BBCPanorama
programme on
#ADHD
seems like it is investigating a problem that I don't think is really there.
I don't think that ADHD or other neurodivergent conditions are over diagnosed, I think that they are under diagnosed and under supported.
@ItsEmilyKaty
For me, one of the most challenging issues is the requirements of some services that you use the telephone. This is something that I simply can't do reliably. I would much prefer a text based way of contacting people (e.g. texts, chat function, or email).
If someone’s home, garden, or how they look is “messy”…
Don’t judge. You don’t know why it is like that and it could well be that they’re disabled and physically and/or mentally just cannot do it.
Part of the Work Capability Assessment (
#WCA
)
#benefit
changes that the Government is proposing are changes to the
#incontinence
criteria.
As someone who regularly experiences incontinence, I wonder if anyone with actual lived experience was involved in proposing the changes?
@I_amMukhtar
I share a similar view to you, Mukhtar.
I think that Shamima Begum was, by definition, a child who was groomed and exploited by men/a regime and is a British citizen, who needs to be returned to the UK, and, if appropriate, needs to answer for her actions here.
I volunteer for the
@alzheimerssoc
, and I am a carer for my Mum, who has mixed (Alzheimer's/Vascular) dementia.
This ad/video is upsetting and misguided, and it needs to be removed. I have explained it and shown part of it to my Mum, who was upset by it.
My Mum is alive.
@autistic_dutske
Yes. There is a term for this: anticipatory grief. I experience it for my Mum, even though she hopefully has quite a lot of time left, as she is living with progressive and ultimately terminal illnesses.
I have emailed the
@DWPgovuk
about an easy read version of the
#PIP
consultation, and also asked if they accept video responses to the consultation, as they may be easier for some people.
@Lucy_Webster_
I bought the last lot that we needed from eBay.
(On a non-advice note it is such a shame that they have disappeared from Amazon and other general shops. My Mum and I need plastic straws, the alternatives simply don't work for us).
The government's
#AskDontAssume
#disability
campaign is not what I want the government to be doing on disability.
I want them to tackle the political and structural issues I and other
#disabled
people face.
Lots of people don't understand how much time
#disability
(and I include living with a chronic illness in this takes).
Time to manage the direct effects of the disability or health condition and then the extra time (including rest time) that day to day activities take.
I've had some time to think about my
#PersonalIndependencePayment
(
#PIP
) renewal demand.
I think there is something wrong with the system. I am 34 years old. I have been
#disabled
since birth. I was on
#DLA
since around 7 years old (at the same equivalent level
I read yesterday that someone in power said that people who are "sitting on benefits" need to get a job, any job.
For me, this showed no real understanding of the benefits system:
- A lot of benefit claimants are in work.
- Carers already work
- Some disabled people can't work.
I took my mobility scooter out for the first time in a long time, to check its battery.
Then I am faced with inaccessible routes due to a vehicle (in this case a van) completely blocking the pavement.
#Disabled
#Disability
#Accessibility
As an
#autistic
and
#neurodivergent
person, I need more time alone than most other people. However, I feel that this need is not understood by many other people, including professionals.
#ActuallyAutistic
Being a
#carer
means celebrating successes that other people take for granted. For example, this morning, with a lot of support and using aids, my Mum managed to transfer from her bed to a chair.
My Mum and I had someone from the NHS around to our home.
The professional asked if I, as a carer, was coping. I said "yes" and then explained that I will always cope, as without my support, there would be little else for my Mum, so the only option I have is to cope.
@adamgordon1978
@GeriSoc
Firstly, I am glad the person involved is okay.
And yet, I wonder, from a patient's and carer's point of view, could they (and the NHS trust they work for) not have foreseen that their nameplate could have been misleading?
This is why people need not to police items like mobility aids, disabled toilets, lifts, disabled parking permits etc.
You can't always tell by looking at someone if they are
#disabled
or not.
(Thanks to
@CoffeeSpoonie
for sharing their experience).
There appears to be no political party in the UK (well, certainly not the two main parties, Conservative and Labour) sticking up for people who cannot work, e.g., due to disabilities or due to caring responsibilities.
#UKPolitics
#Politics
.
I am now ready to introduce two new members of my and my Mum's family and household, our kittens, Harry (who is cream) and Susie (who is grey).
They are brother and sister and are 4 months old.
(The photos have been cropped)
I have experienced challenges being a carer for my Mum, who is living with
#dementia
.
My Mum at times has asked to go home when she was already home, has forgotten my name, and has not recognised me.
I have experienced grief.
My Mum is alive and is living with dementia.
A
#disability
-related expense that people (including social care) don't often consider is the extra flooring cost.
The flooring (carpets, hard floors, and thresholds) in our home has been damaged by mobility equipment, spillages, and accidents (incontinence-related).
The
#PersonalIndependencePayment
(
#PIP
)
#disabillity
benefit mobility component does not cover the real cost of moving around for many disabled people, even at the enhanced rate.
Many disabled people need a car plus mobility aids (wheelchairs, powerchairs, scooters, etc.)
The
#ZeroCovid
strategy recommended by the APPG on
#Coronavirus
seems a sensible idea (that in my opinion should have been adopted as soon as it was possible).
I hope that
@UKLabour
will endorse this report.
@NickBuckleyMBE
I don't know where to start with this tweet. Firstly, Meghan is mixed race/Black. Secondly, Prince Philip was a "foreigner" who did quite well with our culture.
Also, our current King and Queen, plus Anne, are all divorced.
I often get frustrated when well-meaning people and organisations (e.g. charities) say reach out for help for health and social issues, when in my experience people do reach out, but the help isn't there.
Alongside many other changes I want to see to
#PersonalIndependencePayment
(
#PIP
), I think that people need to be able to claim it longer than 28 days if they are in hospital.
A lot of the expenses still continue
My Mum just walked to and from the bathroom (from the lounge) using her rollator for the first time in (probably) a few months (a distance of probably only 10m max with a break in between).
I said wow and I'm proud of her, because she has been working on her leg strength and
My Mum is currently reluctant to have a carer(s) in multiple times a day, as she feels that her home (and her time will not be her own), and she may also fear of (perceived) judgement.
On the other hand, I am not sure I alone can provide the best
#care
my Mum needs and deserves.
I wasn't watching this, but as someone on an out-of-work benefit (employment and support allowance (ESA)), I know the meaning of work.
Things counted as being out of work (which are still work) can include:
- Caring for a family member/friend with a disability.
- Looking after
A massive “fuck you” to the woman in the audience who says that people on out of work benefits don’t know the meaning of work. Thank your lucky starts you don’t know the meaning of debilitating illness, I guess, babes.
@1Judilove
This shouldn't have happened to you or anyone, and I believe it happens far too often. People need to have their prejudices called out, and too often, it falls to Black people to do the work when it needs to be done by people in training.
#SocialCare
in the UK has many issues. Two that I am thinking about today is the cost, it needs to be free at the point of use (nobody chooses to be in the position where they need social care), and it is not
#PersonCentred
. People need to be able to choose the time of their
If you are a praying or sending a kind thoughts to the universe type person, I would really appreciate you praying or sending kind thoughts about my Mum.
The situation is my Mum is medically fit to go home, but it is taking a long time to get the equipment and care needed.
I
I think that the antibiotics are beginning to work for my Mum. She managed to get out of bed and sit in the chair for around 1.5 hours this morning, which was good. She is also less confused, so things are beginning to look up.
Thank you all for your kind messages, prayers, and
I've spoken to the hospital, and if all goes smoothly, my Mum should be home around 4pm to 5pm today, with care starting around then, with 2 carers coming in four times a day.
Twitter/X is such an important community to me.
Due to my disabilities and my caring responsibilities, I can't meet and mix with people face-to-face comfortably/reliably that often (if at all).
I am grateful for everyone I interact with and whose posts I read or like.