wheelchair user

What I’ve learnt from my journey to independent living

Most people want to be independent, to have freedom and be able to make their own decisions, enabling them to live the life they want. But, being disabled can make gaining independence tricker, as Lucy Currier, who has cerebral palsy, has discovered. Here, she shares her tips and learnings from her ongoing journey to independence to help you gain your own. 

Hi, my name is Lucy and I was born with spastic quadriplegia cerebral palsy. Cerebral palsy is a neurological condition caused by a lack of oxygen to the brain.

Depending on which areas of the brain are affected, the condition can be so mild that it may not be visible, or so extreme that a person cannot move at all or has learning difficulties.

In my case, the area of my brain that controls movement was affected, meaning that I’m reliant on an electric/powered wheelchair to be mobile. I also require care support as I need assistance with personal care and all daily living tasks.

Lucy Currier outside in a sunhat

Moving out from our family home

I currently live two days a week in a flat of my own and the rest of the time with my family in Birmingham, a city that I have called home for all of my life.

I am the oldest of three siblings. At my parents’ house, it’s just me, my brother and our fourteen-year-old dog as my sister moved out a couple of years ago.

I was very lucky that my family were able to buy me a property when the council had no suitable options. I wanted to have a two-bedroom place so that my PA would have somewhere to sleep – not an uncommon or unreasonable ask. But the council refused to see a need for a second bedroom.

But the accommodation wasn’t all that I needed to consider. Leaving home when you’re reliant on others for assistance can be challenging and costly. So, I am only able to stay at my flat twice a week while I wait for more budget to pay staff full-time.

While I’m still not totally where I want to be, I have already learnt a lot along the way that I hope will make someone else’s journey a little bit easier.

Hurdles to being independent

For the majority of people, being able to afford somewhere to live is difficult enough. But, for me and many others like me, we face the additional question of how we’re going to find and afford to pay personal assistants as well? For me, the answer was Direct Payments.

Lucy Currier in her wheelchair in the woods

Direct Payments – be vocal and keep records

A Direct Payment is a sum of money given to an individual to pay the cost of employing personal assistants/carers to meet their needs. In order to get this, you first have to go through a painstakingly-detailed assessment, which I am sure many readers will have experienced for themselves.

I had my first proper assessment two years ago, which enabled me to move out part-time. But am now asking for a reassessment as I need more funds to have PA cover for a full week.

I have found this process extremely hard as it can sometimes feel like no one is listening. One thing I have learnt from all my triumphs and trials with Direct Payments is that you have to speak up!

To help tackle this, earlier in the year I attended a Direct Payments Conference, where I got to speak to some of the key people running Birmingham social services. Making yourself heard, in any way you can, is vital. I’m hopeful that my next assessment will now be more positive.

The second most important thing is getting everything in writing. A written record is your friend. I spent three months phoning social services every day asking for a social worker. But I have nothing to prove that I did this. However, if I had emailed daily, I would.

The more information you have the better. At the conference, I was able to provide dates of when I requested certain information through notes I’d kept. Without this, I doubt I would’ve been taken as seriously as I was.

Fight for what you need to live independently

Looking back, I have a habit of believing what people tell me when they are in an official role. This has, time and time again, stopped me from living my life the way I want to.

For example, when I left mainstream school I wanted to go to university. But I didn’t because I believed that having PA/care support away from home would be too restricting.

The disability officer at my prospective university offered to provide me with all the educational tools I needed. But when it came to personal care, I would have to specify the times I required assistance.

This caused me a great deal of anxiety, so instead of researching and fighting for the flexibility I needed, I stayed at home and completed a degree with The Open University.

I’m proud of this achievement – I got a 2:1 in health and social care and mental health subjects – but I wish I’d fought to live my life my way.

With finding accessible accommodation, I waited far too long on the word of the social services officer who said they could find me somewhere suitable. In the end, I had to take matters into my own hands.

Lucy in a supermarket with a shopping basket on her wheelchair

Find the right PA for you

Finding the right PA/s for you can be difficult. I’d ideally like more assistance with recruiting the right staff on the budget I have. But, so far, I have already learnt a lot.

The PA I have now is lovely, but I have had people apply who would want to control how I spend my day. At times, I have thought that I should be grateful for whatever help they give me.

It’s always nice to be thankful for the assistance you receive, but don’t be grateful to the point of putting your own wishes to one side.

I was once called ungrateful by a PA when I refused to eat the raw sausage she put in front of me. I felt guilty at the time. But it was only later when talking with family, seeing how shocked they were, that I realised how introverted I had become.

I’m a member of several disability groups and we seem to live in a society in which the care profession thinks we should gratefully receive whatever help we get, however inadequate.

Never settle for anything less than what makes you comfortable.

Hiring a carer/PA – top tips

To ensure I have a good working relationship with my PAs, here’s what I now do:

  • I write my own support plan so that people know what to expect. If there is any aspect of my support they are not happy with then it is not the job for them. I always send it out with my job application forms so that they know upfront.
  • Be polite but firm and clear. I now avoid some phrases, such as “I’m sorry but” or “when you have a minute…” because some people will take advantage and not do what’s been asked.
  • I now have a folder that lists all the main tasks that need completing each day and my general preferences.
  • I make sure that my payroll company has the contract of employment finalised and signed BEFORE anyone starts work. It takes longer this way, but it means both myself and my PA are protected. Likewise with DBS checks.

Some people reading the above list will be horrified that these things weren’t done from the beginning. But the reality of my situation is that there was no one to tell me these things.

I believe that the system needs to change so that everyone new to employing support workers/carers/PAs, whatever name you prefer, knows the basics. I’m still learning and progressing, but that’s true of everyone.

By Lucy Currier

To read more from Lucy, visit her blog, Inclusive Living Concepts.

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Grant Logan founder of Ability Today: equipping disabled people with information and skills

Grant Logan is a disabled entrepreneur whose goal is to connect disabled people and equip them with information and skills. Having become disabled after a bike accident, he discovered how scarce knowledge and advice was in the disability world and set about improving it.

He now runs Ability Today, a website with information and resources, and founded The Academy for Disabled Journalists to help the next generation of disabled writers and campaigners. Grant has also made the Power 100 list this year, a fantastic achievement. Here, our writer and editor Lucy, who is enrolled with the academy, speaks to him about his life and career.

Before your bike accident in 2003, were you aware of disability?

Not really. I hadn’t come into contact with anyone with a disability until Mom saw a notice in our local doctors for support workers to help a disabled child with physiotherapy.

It was interesting and eye-opening. That was my first understanding of what disability meant.

How does your disability affect you?

I am a full-time wheelchair user and paralysed from the chest down. This limits my physical activity, but I try not to let it limit my everyday life.

I had a tough first couple of years when I caught MRSA and had to have all my reconstructive surgery undone. I was in a dark place!Grant Logan sat at his desk with the Ability Today website on his computer screen

I remember when I came home from the hospital and lay down in my bed for the first time and thought that this was going to be my prison from now on.

It was thanks to disability organisations, such as Back Up Trust, which I discovered through the spinal cord injuries ward, that made me realise my life wasn’t over. 

I remember going on an activity course with them and realising I could still achieve my dreams.

You have a love of all things adventurous. Was it finding organisations to do activities that gave you the drive to arm the disabled community with information?

The first website/social media community I set up was The Wheel Life. This is what allowed me to get involved with all the adventures I’ve been on over the years.

The motivation for setting up Disability Today (as it was then known) was that I kept hearing on returning from these adventures, “Oh, I wish I’d known about that.” I realised that I might be able to help people.

I was disabled for four or five years before I even knew that the Disabled Water Ski and Wakeboard Association was twenty minutes down the road.

What is your favourite hobby?

Grant Logan travelling to Ben Nevis to raise money for Capability Scotland.The Photo shows Grant in an terrain manual wheelchair climbing Ben Nevis. Grant is wearing black ttrousers and a blue T-shirt with sunglasses on his face.
Grant Logan climbing Ben Nevis to raise money for Capability Scotland.

I’ve been lucky enough to do many things. Paragliding, abseiling, flying, rally driving, motorcycling, clay pigeon shooting, in addition to climbing Ben Nevis for Capability Scotland and the skiing and waterskiing already mentioned.

The Back Up Trust were the first organisation to introduce me to activities following my accident in the form of one of their multi-activity weeks.

Grant Logan Waterskiing

I lost my favourite hobby a few months ago when my dog died of old age. He was nearly 16. I got him the year after my accident, so he’d been with me on the long journey and was my wingman and best little buddy.

I enjoyed walking him every day using my trike. I loved getting out and about and away from the office for a couple of hours. I am sure I will get a new little buddy at some point. I’m just not ready yet.

You launched Disability Today in 2017 and renamed Ability Today in 2019. How did your current company arise from your social media community, The Wheel Life?

The Wheel Life died off because it couldn’t compete with Facebook, but providing news became the next obvious step when so many people I knew didn’t know about the stuff going on around them.

It was simply trying to highlight some of the smaller organisations that are doing fantastic work and trying to make sure that people knew about them. Organisations don’t always have marketing budgets.

What is next for Ability Today, and what are your plans for the future?

We are in the middle of updating the website to make it more readable/accessible. Our priority has become the Academies for Disabled Journalists and growing that for the benefit of our community.

With our news and directory pages we’re just trying to make it even easier for these organisations reach a bigger audience and put relevant news in front of disabled people.

Having launched Ability Today, you then decided to launch the Academy for Disabled Journalists. How did this start, and how can it help disabled people?

 I had a team of volunteers helping me in the office (before Covid) who became my ‘roving reporters’. The video stories I started when I first climbed Ben Nevis.

We sent Steph to try out waterskiing at Access Adventures, Khaleel to Aerobility to try out flying, Heather scuba diving at the Scuba Trust and Khaleel simply travelling to London on trains and buses to see how he gets his ticket and gets on and off public transport.

I thought that there was something wider I could do here, so I got in touch with the NCTJ (National Council for the Training of Journalists) to see how we could turn our reporters into proper journalists. The Academy for Disabled Journalists was born!

Grant Logan wearing a suit sat in his wheelchair outside Number 10 Downing Street

Has the Academy for Disabled Journalists increased awareness in the workplace, and what more do you think needs to be done for journalism to be inclusive?

The academy aims to train tomorrow’s disabled journalists today, giving a more inclusive pathway to employment. We are in talks with the BBC, Sky, ITV and Reach to see how we can collaborate with them in providing work experience for the next generation of journalists from the disabled community.

These organisations are currently putting schemes in place, such as the BBC’s 50:50 Equality Project, to ensure fair representation and I hope that the academy can play a part in creating a more diverse and inclusive workforce.

Now at a great time – big organisations want to be seen to be inclusive and diverse. Ability Today and our academies want to provide the workforce for tomorrow.

You recently started offering a diploma in journalism to your students. What barriers, if any, had to be overcome for this to happen?

In October, we launched the diploma level in journalism. As with the Certificate in Foundation Journalism, we will be providing this as a complete online learning course and making it the most accessible diploma in journalism available. 

As one of our students recently said, “Often my body doesn’t allow me to leave the house, but there’s nothing wrong with my mind.” If physically going to college or university has been prohibitive before due to disability, we are lifting these barriers. To find out more, please contact me by emailing grant@abilitytoday.com, or visit the Ability Today website.

Hannah Deakin, our Ability Today volunteer and Academy for Disabled Journalists student, also made the Power 100 List in Digital and Media along with our Ambassador for Ability Today, Olivia Gallagher, making Judges Choice. This shows what people are capable of when given opportunities to learn and excel.

Academy of Disabled Journalists Class 2021

Do you see the academy progressing beyond the diploma?

The next phase of the academy’s growth is to offer new areas to train to work from home. Covid has provided everyone with the capability of working from home, and I want disabled people to thrive from this.

We currently have a short survey out on social media asking what people would like to learn to be able to work from home – you can take part in the survey now. We plan to launch the new academies this year.

Anything that you can do as an individual to be able to work from home, then let’s help train our communities to do it!

Interview by Lucy Currier

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