Disability Costs

Mobility car with ramp out on a pavement. 

Disability Costs

In the UK, perhaps even around the world, we are in a cost of living crisis. Disabled, vulnerable and chronically ill people are undoubtably feeling the squeeze too, maybe most of all.

Lately, I have noticed some awful, judgemental comments on social media, deeming those unable to work as 'unworthy', 'scroungers' and a mainstream television show has even questioned whether the most vulnerable in society should have their benefits stopped all together. These wealthy folks who talk about kindness, would see us suffer.


Let’s dispel some myths:

Myth 1: Being disabled, you get everything free.

This is laughable it's so wrong, I’ll explain what I mean in a minute.

Myth 2: Being unable to work, you have oodles of free time.

Hahaha. Have you met my neurologists, ophthalmologist, audiologist, gynaecologist, gastroenterologist, dietitian, physiotherapist and SALT team? Many of which I have to fight to get an appointment with.

Myth 3: Everyone is empathic to disabled people and the law is always on your side,

as if.

I shall explain below....


Something that bugs me is the way businesses hike up the price of disabled specialist equipment. Do they not know that disabled people are some of the poorest in society? To afford a life enhancing bit of kit, you either have to beg a charity for a grant or, when they say you don't 'fit their criteria', fundraise for it yourself. It’s humiliating.

Why do businesses see disabled customers as loaded, when we're some of the poorest in society?

I recently went to a disability communication equipment event. Most of the gadgets were thousands of pounds. Two pieces I liked were a computer that talks, has a simple screen and takes verbal instructions. The cost is nearly £1500. I don't have that kind of money, so have swallowed my pride and asked for help.

The other thing was a device that clips on to your glasss, you have to upload photos of people you see regularly and then it tells you when they are nearby. It also reads text. This nifty gadget is for blind/visually impaired or those with dementia, comes in at a hefty £4000!!


As I learnt on my trip to London, a hotel chain felt no shame in making disabled and chronically ill guests pay an extra £21 on top of the breakfast fee just to take my life saving meditation.

Recently, my wheelchair has been breaking, bits are falling off and it's not driving as well. I was telling my friend, she said, 'Can’t you just get another from the council?'

'I saved up to buy this. The council didn't think I was a good driver, being blind.'

She was shocked. I am not, having recently heard of this happening to a person with epilepsy. It’s unfair that someones independence is compromised due to disability.


It’s a common misconception that councils fund things like equipment, mobility aids etc, they don’t, we even have to fight to get the medication, treatment and cars we need.

I saved up for a wheelchair. It cost about £1800, probably more now with inflation.

I also pay a weekly fee for the support from my p.a's I receive. If my hours needed increasing, I have to fight and beg, show the social worker that it’s a positive to increase my independence and how i'll use my time.


Nothing is ever free when you have a disability. It’s invasive and humiliating, constantly having to prove your worth to those who don't have a clue.


People say disabled people don't 'deserve' the mobility cars. Here is why we do:

* it's not a 'free car'. We still have to fuel and maintain it.

* before you are even granted the vehicle, you have to pay out on any adaptations, which can be around a few grand. Dependent on whether your car is new or second hand, you will have to update the car every 3-5 years and be able to afford any alterations.

* not every disabled person is entitled to a car. It goes on what benefits you get.

* it is not a free car. You are not given it, nor do you own it, you rent it, as the company who do the alterations take a chunk of your regular benefit.

* People may say, ‘get public transport,' which is all well and good until you realize that:

* most train stations do not have access.

* with disability, although 'spontaneous travel’ is a human right, it’s not always easy and everything needs careful planning: tickets and the accessible seats, ramps, checking you can get into the station.

* there are some stations that, despite booking the assistance, despite assurances, are not there and leave you, a disabled, vulnerable customer, who has paid for a rail journey, stranded.

One such train station was Manchester Deansgate. I used to attend a writing group in Manchester. My mum/p.a had to escort me due to the amount of times (pretty much every time) I was left stranded. My mum/p.a had to hang out of the door until someone let us off so that the train didn't drive off... No wonder I was too scared to go on my own, who knows where I’d have ended up!

I stopped going to the writing group about 10 years ago, so hopefully they have improved, but I don't know. What I do know is, this treatment of forgetting passengers, still happens, in this era of 'equality'.

* buses are small, have random bars strategically placed to get in the way of wheelchair users.

Then, before even getting on, you have to beg the driver to put the ramp down. My worst experience was on the Avon bus. I was coming home from town with a friend, asked the bus driver for the ramp.

'I haven't got a ramp.'

'You must do. It's the law.'

He aggressively shouted at me that I wasn't welcome. My friend pointed out that it was winter, cold and raining. He shrugged, uncaring.

My friend helped me get on the bus.

When it was time to get off, he let me struggle, practically damaging my chair in the process.

As soon as I got home, I wrote a letter of complaint. The reply I received was insulting! The woman in charge stated that I should have seen the 'pram only' and the sticker that had a picture of a wheelchair with big, red line through! Apparently, although I am blind, I should have seen this bit of visual discrimination.

Avon buses went bust.

This is not the only awfulness I have endured.

Bus drivers have seen me at the bus stop and driven by, some have even let other passengers on and shut the door in my face!

As many of you will know, I haven't stopped wearing a facemask and being vulnerable, anything potentially catching can be life-changing or worse, so I try and avoid situations that are unventilated etc.

Some say, 'get a taxi', but the issues here are:

* the expense. Some charge more for a wheelchair.

* not all firms have access.

* some drivers have refused entry to a blind/visually impaired person because they have a guide dog.

*some taxi firms don’t even have an accessible cab.

It’s becoming harder to be disabled in Britain.

Despite the Human Rights Act and Equality Act, businesses such as Network Rail are proudly flouting these laws that say they can't discriminate against those of a different skin tone, gender, religion, sexuality or disability. Ok, sure they have rainbow painted trains to acknowledge pride, but they are building inaccessible bridges, making it impossible for wheelchair users to use their services! Surely equality should be for all, not just favouring one particular group.

I have recently learnt that certain U.K. councils, including York (when under the Green Party)banned blue badge holders from the city centre. This is despicable. It tells me that I am not welcome because I am disabled. Luckily this is now being reversed.

In the York MP’s anti disability pledge to exclude us, one of his measures was to, in a car park, remove many of the vital disabled car parking spaces and replace them with cycle lanes.

It is only thanks to disability rights activists that the reverse the ban campaign was launched in the April 2023 elections, a Labour counsellor was voted in and has vowed to reverse the blue badge ban. I do not know if he has yet.

https://www.yorkpress.co.uk/news/19727506.blue-badge-holders-permanently-banned-parking-york-footstreets/

https://reversetheban.co.uk/

https://www.yorkhumanrights.org/current-work/reverse-the-ban/


It feels like everyday there is another hatred to overcome whether its the Telegraph calling us 'burdens', Jeremy Vine saying we are a waste of money, politicians and councils trying to exclude us, it’s so demoralising.

https://www.disabilitynewsservice.com/broadcasters-silence-over-rabblerouser-tweet-on-disability-benefits/

Am I as a disabled person, not human? Do the trolls who said I should not have been 'bred', I should have been 'put down at birth' because of my health condition means I am visually impaired, hearing impaired, have aphasia, dystonia, use a wheelchair among other symptoms. Do those trolls really deem me (and others) so disposable?

Yes, tax payers do fund a portion of my existence, but without it, I wouldn't be alive.

Disabled people do contribute so much, here are a few that I have given:

* creativity.

I am an artist, a writer, a photographer. Don't diminish me.

* Science. I raise awareness of my health condition to doctors and the public.

* Volunteer.

* Fighting disability injustices. This is so exhausting. Everyday a new discrimination arises.

If the healthy, perhaps mainstream media, businesses, politicians or a person in the street still judges a disabled life to be ‘a burden on tax payers', ask yourself, could you do it? Could you handle being told,

'you don't fit the criteria for a new piece of equipment/medical treatment', 'we don't have disabled access/toilet', 'no wheelchairs allowed', 'show me proof of your health condition', 'this area no longer permits blue badge holders', and worst of all, 'there’s nothing we can do'.

The likelihood is everyone will at some point become ill or disabled, but they make those of us already there feel like we are not even part of the human race.

It seems to be up to disabled people and charities to make the necessary positive changes. RNIB and Scope are campaigning for the rights of disabled people and to change government policies as well as industry accessibility requirements.

https://www.rnib.org.uk

https://www.scope.org.uk

One day there will be equality for all.