FTWW’s Response to ‘Locked out: liberating disabled people’s lives and rights in Wales beyond Covid-19’

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FTWW welcomes the publication of, ‘Locked out…’, a ground-breaking report on the impact of Covid19 on disabled people in Wales.

We were pleased to be among the diverse and intersectional group of disabled people and organisations involved in coproducing it. We are encouraged that the report had Welsh Government’s full support throughout, and has been published it in its entirety with no redactions.

A Minister-led task force is now being created, co-chaired by members of the disabled community, to implement recommendations. This will mean that the voices and experiences of disabled people in Wales are properly heard throughout discussions and that, when it comes to actions, there is ‘nothing about us, without us’.

FTWW is particularly pleased to see that the devastating impact the pandemic has had on many disabled women and people assigned female at birth (AFAB) properly considered and included in the report. What is perhaps most important to note is that the pandemic has served merely to highlight pre-existing inequalities in our society, with disabled people amongst those most badly affected. Lest we forget, 68% of Covid-related deaths in Wales were, tragically, amongst the disabled community.

It is sadly no surprise to us that women are bearing the brunt of the NHS backlog that exists as a result of the pandemic. An analysis of NHS data published over the weekend confirms that gynaecology provision has been hit hardest in terms of delays and difficulties in accessing appropriate treatment and specialist care. This will undoubtedly have a major impact on the prognoses and wellbeing of the many women living with chronic, untreated, gynaecological issues, including prolonged and heavy bleeding, severe pain, and organ dysfunction.

Judging by the many accounts that reach FTWW, it’s fair to say that benign gynaecological conditions seem to very much be the poor relation both in public perception and our NHS, with symptoms historically deemed less urgent and less important. Long before Covid reared its head, waiting lists for gynaecology services were excessive, largely due to Wales’s lack of investment in adequate service provision. This has been compounded by the pandemic, with increasing numbers of women and those AFAB struggling for longer periods of time and with worsening symptoms. Endometriosis – a condition that affects at least one in ten is a prime example of this: the waiting list for surgery with the specialist team in Cardiff is now said to be a staggering five years.

Disabled women and AFAB have also struggled to access maternity and peri-natal mental health services. Throughout the pandemic, there has been an expectation that women attend antenatal appointments and scans alone, with exceptions only made if the woman can justify them. Unfortunately, for those disabled women with additional communication needs or mental health issues, the ableist assumption that everyone is able to verbalise their circumstances has left some people unable to articulate their needs and struggling as a result. Where peri-natal mental health is concerned, the decision to provide many health visitor appointments over the telephone will have resulted in missed opportunities to support D/deaf women, amongst others.

We know that there was a rise in domestic abuse during the pandemic. We are pleased that the more complex circumstances and additional needs of disabled women in this regard have been included in the report.

We are pleased to see the report highlight the impact of the pandemic on living costs for disabled people, which can far exceed those of people without an impairment. Disabled females are among the poorest in Wales, with older generations particularly likely to be living in poverty and with fewer years ‘disability-free’ than males.

Moving forward, as we ‘build back FAIRER’, we want to stress that many disabled people have no desire to return to ‘normal’ because ‘normal’ did not work for everyone. The report explores in detail how workplaces can be more inclusive and supportive for disabled people, something that is vitally important for women and AFAB, whose health conditions can often be shrouded in taboo.

We believe that the devastating impact of Covid-19 – and the measures introduced to manage it – can never be allowed to happen again. Lessons must be learned to ensure that disabled people are adequately supported and protected in the future. Our thoughts are with all of those who have lost loved ones or have suffered during the pandemic. We believe that disabled people are not disposable and will endeavour to continue our campaigning for improved healthcare for disabled women and those assigned female at birth living in Wales.

Thank you for reading.

Dr Sally Rees
FTWW Chair


CASE STUDY

Dee lives in South Wales. She said: “My health declined during the pandemic, and I had to give up my job. Although I am now working part-time, our household income has taken a huge hit and I am currently appealing a refusal of benefits that I should be entitled to due to my disability. I have no doubt that the discriminatory benefits system has contributed to the unacceptable death toll of Disabled people during the pandemic, as well as the lack of specialist healthcare routes needed by many patients in Wales. I have M.E., Fibromyalgia and Endometriosis, and can only access appropriate support if I pay privately – there are no specialist clinics in my area. Communication around my health has broken down too; I was refused a referral to Occupational Therapy, but I wasn’t informed until I chased it up. I do feel quite abandoned, with no appropriate medical or social support.

Despite this, I am acutely aware of my privilege. Changes and reasonable adjustments that Disabled people have fought for for years were implemented very quickly during the pandemic; being able to work and study from home, as well as access to healthcare over the phone and online. I can enjoy leisure events from the comfort of home. I am really worried that the accommodations made during the pandemic will be removed as restrictions are lifted. Disabled people have been forgotten and disregarded for too long, and so many of us have no desire to go back to how things were; “normal” didn’t work for everyone.”