2022-A Year Of Challenges

2022 has been an eventful year. A year of challenges with regard to equipment, with beds, air flow mattresses, powerchairs, wheelchair accessible vehicles (WAVs), oxygen concentrators and more all needing replacing, and battles, a lot of them; nevertheless a few positive and special things also occurring.

Equipment

Electric Bed and Air Mattress

I spent more than a quarter of the year without a bed, no suitable air mattress and electric profiling bed, or one and not the other. It was horrible. It made me realise what difference the right piece of equipment makes, to my independence, pain, fatigue and quality of life. 

Both with my bed and powerchair I realise how my height has a significant impact on equipment and one size does not fit all! It seems many disabled people are not so tall and the market doesn’t cater for them so much. 

Therapy Funding Cut

After years of therapy, where I have made slow but steady progress. Continuing Healthcare decided to stop my therapy funding.  After getting several supporting letters just before Christmas I got the good news that they will continue it for 3 months. But I am not sure what they expect to happen in 3 months, and whether I am going to have to reapply every 3 months? It has taken the last 3 months to get supporting letters, so I suppose I had better start now! It adds to the stress and administration unnecessarily.

New Powerchair

I have been looking at and then being assessed for a new powerchair, dealing with Access to Work, Wheelchair Services, quite a bit of paperwork and stress etc I will do a blog post on this next year as think it may help a few people. Nevertheless, my new powerchair is officially ordered and should be coming at the end of January/beginning of February!

New WAV

I said goodbye to my Kia Sedona WAV which I had had for many years and been a lifeline.

I got my new GM Coachworks VW Transporter Shuttle in May 2022 after it being on order for 18 months through Motability. It has been great, different and bigger, but it is nice sitting up front. Unfortunately, in October there was a VW issue with it, which resulted in it not being drivable and I was told I would not have my WAV for up to a year. Luckily with a lot of phone calls, we managed to sort it out an alternative way, and I ended up only without my car for 2 weeks. Still stressful as I can’t get on public transport and am too tall for most WAV taxis, but a vast improvement.  I had a lot of challenges with taxis, but luckily in the end only needed to manage 2 weeks in November and a week in December.

ACCA

I started studying Association of Chartered Certified Accountants (ACCA) in June. I took and passed my first ACCA exam, Taxation, in September. Since, I have very slowly started studying towards Corporate and Business Law and hope to take my exam at some point in early 2023.

You may be interested in reading: An Employee For A Year: My First Work Anniversary on when I completed one year of employment in March 2022.

Awareness and Activism

I was featured on Good Morning Britain, the I newspaper and Radio 5 Live to name a few. I participated in Royal Holloway’s documentary ‘Invisible’ and was the guest speaker at Surrey Coalition of Disabled People’s AGM, where I spoke on: ‘How to Harness Social Media in Our Disability Activism’. I have also had other opportunities which I am actually proud to say I have declined, (something I am not good at) but it would have been too much.

Articles I Have Written in 2022

A guest blog post on Undercover Superhero’s blog: The Reality of Complex Regional Pain Syndrome and more

An article I wrote for Disability Horizons on journalism and the Academy for Disabled Journalists: Disabled student journalist calls an innovative accessible course a “stepping stone to a career in journalism”

Feature Articles

• An article on me on Starlight Children’s Foundation‘s website about my #BenHannah3530 challenge.
• The Express online on the cost of living and energy crisis and its impact on disabled people: ‘You need to be a millionaire to be disabled’- Woman on PIP and ESA shares struggle
• BBC news online on the transfer of disabled people from Employment Support Allowance (ESA) to Universal Credit (UC): Universal Credit switchover is bad move, says charities.
• The Daily Mirror online on the transfer of disabled people from Employment Support Allowance (ESA) to Universal Credit (UC): Disabled woman fears facing ‘bigger battles’ after forced switch to Universal Credit
• The Express online on the government achieving their milestone of getting 1 million disabled people into work, disability benefits and employment. ‘I was really worried’ Misconceptions and benefits system keeping disabled employees back
• I news on the cost of living crisis: Cost of living crisis: I need an electric wheelchair but energy bills are skyrocketing
• The Times online money matters on Universal Credit and benefits. The section on me is about one third of the way down the guide: Universal Credit and benefits: who gets them and how to apply.

Radio, TV and Documentary

An interview on BBC Radio 5 Live on the transfer of disabled people from Employment Support Allowance (ESA) to Universal Credit (UC). You can find me speaking between 1hr 55 minutes-2 hrs. (Unfortunatley I think this only works for 30 days-so may not now work.)

I was on ITV Good Morning Britain talking about the cost of living crisis. Particularly how it will affect disabled and chronically ill individuals.

I was featured as one of the six disabled activists in the documentary Invisible. The first screening was on 1st December 2022. This was directed by Dr Anica Zeyen (Royal Holloway University) and Professor Oana Branzei (Ontario, Canada). This was recorded in April.

Bridesmaid and Godmother

In October I had the honour of being a bridesmaid to the lovely Sophie. It really was a truly special Wedding.

I am lucky to have officially become Godmother three more times in 2022 to three gorgeous children- Sophie, Felicity and Edward. I hope I do a good job!

I hope you have had a good year with not too many challenges.

Hannah x