Voices from the margins: Sandra’s story

Throughout this week we are highlighting the human cost of pursuing recession fuelling policies.

Unless you are personally affected by disability, it can be hard to realise just what having a disability means. There are over 14 million people in the UK with a disability. 19% of working age adults are disabled. 46% of pensionable age adults are disabled. Nearly half the population can expect to be affected by disability if they live to pensionable age.

But these figures mean very little unless you are personally affected either by having a disability or being the carer of somebody with a disability. That it costs £583 more on average a month for a disabled person to survive is simply another figure that means little to most people.

This Sunday (April 10th) sees the second Big Power Off protest, and we caught up with disabled activist and campaigner Sandra Wyman from Leeds to see what these policies mean in practice. This is Sandra’s story:

I’m 75 and determined to be independent for as long as possible but feeling desperate about what the future holds. This is far from what I expected life to be like at my age. I’m a retired teacher – I retired in my early 40s as a result of ME [Myalgic encephalomyelitis, also called chronic fatigue syndrome]. I have ME and Long Covid, plus three cancers. I’m not considered impaired enough for Attendance Allowance and, being over retirement age, I’m ineligible for PIP. Despite being disabled, there are no benefits available to support the additional costs of disability and without PIP I am unable to access other benefits.
On retirement I had enough to live on having fairly modest needs. But, several years of no or low pension increases have made a difference. For a while, I used credit cards to help with fuel bills and unexpected expenses plus the occasional social event and over time this has run up credit card debts. The accounts are now closed and I’m repaying but much of the repayment is interest. I am desperately trying to rearrange things and sell stuff in order to meet increased bills (fuel, mortgage and others) and still have enough left over for food. So far I have hung on to my car, as I cannot walk far, and it gives me a measure of independence which is important to me; without a car I’d have to use taxis. I can’t afford a scooter or powered wheelchair. I can’t afford to pay for care or domestic help. Selling my house (needs repairs, redecorating and decluttering in order to do so and get enough to find somewhere smaller and more accessible) could help but I am seriously energy impaired.
My gas bill direct debit has increased by 250%. Electricity is by meter so I don’t know how much the increase will be as yet. On Sunday I’ll be using as little power as possible. For part of the day I will switch off all power. We hope to make people aware that disabled people exist and we are disproportionately affected. If enough people take part it will reduce the fuel firms’ profits so they may notice that they depend on us. It’s an unusual form of protest that will make people ask ‘why?’ if it gets enough publicity. The ONLY way positive change has happened is as a result of protest and there are powerful protest movements in action at present. If people are willing to take part, there could be change as well as a sense of empowerment for all of us individually
The opposition parties are not doing enough to help people and that includes my own party, especially the leadership. I’m the Disability Officer for Leeds North East Constituency Labour Party. Locally we have a good Labour council which has held on to anti-austerity policies despite a 90% cut to the budget over recent years, including support for disabled people. The political will is there. Hopefully the council will survive as Labour: in the past all the other parties including Greens have united in coalition against Labour’s anti-austerity policies.
I don’t hold up any hope that with the current leadership of the Labour Party a change of government would bring about a significant change UNLESS the party itself changes. There will need to be significant changes amongst the left in politics if it is to become a force to be reckoned with. And, unless we get really effective green policies in action, we are all stuffed.

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