I’m a professional disabled person. I’ve been doing this barrier breaking, rights fighting thing for a while now. Trust me I’ve learned the ropes.
So I decided to share my top 10 tips for being a kick-ass disabled person. Be sure to share your ideas too in the comments section and on my @martynsibley social media channels.
And remember don’t take life too seriously. It’s often what you make of it that counts.
1. Planning
When you need to use a hoist and accessible bathroom to pooh, planning is your friend. When I flew to Australia I literally had to plan when I used the loo, to give me a fighting chance of reaching Singapore safely. Yea, aeroplanes are not so accessible in that way either.
It’s not just pooing that needs planning. When you are a kick-ass disabled person you have to plan around health appointments, Personal care Assistants, accessible venues, and company policies.
Did you know: to request ramp assistance at railway stations, you should give 24 hours warning? Don’t know about you, but I don’t know when a meeting will finish tomorrow (both for work or social reasons).
I just rock up smiling and kill the system with kindness.
2. Communication
“Can you push my head forward?”.
“Oh and my foot back a bit? No, the other foot.”
“My ear has folded on the pillow. Can you straighten it please?”.
This is me getting comfortable at night time. Just one of the many things in my day I have to articulate to a care support worker. Imagine the toilet and bath routine!
Communication is very important in life. To have harmonious family, friend, and work relationships we need good communication. The better you are, the further you’ll go.
My Personal care Assistants are so important to me. They are my arms and legs. They’re also human beings. It’s important that they are healthy and happy too.
For me, communication isn’t giving orders. It’s being empathetic and listening. Of course you can’t just talk or listen, to the detriment of getting a bath or comfortable at night. But manners, compassion, and patience will get you far.
This is the same for when asking a venue or company policy to be more inclusive. An empathetic understanding of their perspective will result in your priorities being met too. Win:wins are everywhere. You just have to look for them.
3. Physical health
The only sit ups I can do are using the electric motor on my wheelchairs backrest. I’m never going to be Mr.Motivator (there he is above – 1990s legend).
Often physically disabled people assume that they can only strengthen their mind. Why bother with healthy food, good sleep, exercise and associated practices. After all our bodies don’t work properly!?
This was definitely going on in my subconscious through my adult life. Until recently. My belly grew a bit. I felt more tired. My muscles ached.
Basically I got older…
Suddenly a lightbulb turned on. My body and mind are connected. Plus I do use my body in lots of ways I didn’t realise.
Since eating better, drinking more water, sleeping 8 hours, cutting down on alcohol, taking supplements, and doing more physio – I’m feeling a lot better again.
I need this suit to carry me for a lot longer. My mind has big plans for us!
4. Emotional wellbeing
You might think from reading point 1 and 2 I’d get down about being disabled. When I was a teenager I did a bit. But I’m pretty cool with being physically weak. It’s the last thing that defines me. Plus its not mine or anyone elses fault. The key to my happiness is having the right government support and social inclusion in place. Then I’m totally in charge.
What really does stress me out is the suffering of others. When my family or friends or fellow disabled people feel low, I’m a huge ’empath’. I feel that pain. I want to solve everything. I then realise I can’t. So I get down.
Following the recent disability rights regression, I’ve struggled a lot. But I think I’ve found a way. I’m not letting the negative news or stories get inside of me. Instead I’m tirelessly working for those solutions. I’m ready to collaborate. But in a no pressure way. It’s my life mission, that I will plug away on, regardless.
I’ve also learned to switch off a bit more. I go outside for daily fresh air. I’m practicing mindfulness. Enjoying my meals, drinks, projects and social interactions. I am reading and writing more. Watching good movies. Most of all enjoying the kisses and cuddles with my soul mate. Yuk. Sorry. How did that get in there? ?
Overall I’m trying not to grapple for control over everything. Bad things happen. Trust yourself to do the right thing. Plus see point 10 on always learning.
5. Care and equipment
Without the necessary support for independent living, everything else is irrelevant.
So I advise you to read about, ask questions, and demand basic rights. Despite recent cut backs there is government and other funding for health and social care. Just please make sure you fight for the necessary care and equipment.
It’s not your fault you are disabled. A good society should recognise and cater for that. Don’t give in.
Plus you can get creative with the technology that enables you. My smart phone is my office. I read, write, listen, communicate and store documents on it. I also operate the central heating from an app. Assistive technology is everywhere. Go research the right solutions for you.
6. Housing
Our environment is so important for health and happiness. We all should wake up, feel safe, with a calmness, and enjoyment of our surroundings.
Without being too obvious. It’s nice to be able to get in the building, through the doors, and to use the amenities. Something that isn’t always ok.
But with research, knowledge and vision – housing can be accessible. With ramps, hoists, and technology – a house can be an accessible home (watch out for my long post just on this topic soon).
7. Finances (work/benefits)
If you hadn’t heard the news, we live in a capitalist society. It’s by no means perfect, but other economic models have failed more spectacularly. So like it or not, we need money for basic and fulfilling lives.
First off, being disabled costs more. Fact. That’s why the government have the Personal Independence Payment (PIP – Formerly the Disability Living Allowance). Plus other benefits are available like income and housing support for those unable or out of work. Anyone looking for work but facing difficulties, there is Employment Support Allowance.
Now don’t get me wrong. These aren’t always easy to access. They’re being cut too. There’s definitely lots of paperwork and meetings. So do use organisations like Disability Rights UK for support.
It’s worth the stress and effort to get financially stable. In the long run its best.
If you are able to work, there’s other funding streams like Access to Work. This covers the expenses of travelling to and being at work. Also some employers aren’t so accessible. Ignore them. There’s plenty of businesses actively seeking disabled employees now. Try the disability friendly jobs board Evenbreak for example.
There’s no reason why most disabled people can’t work. Even part time and/or from home. We just need to protect the government funding and encourage inclusive businesses to see our talents.
I’ve worked Monday to Friday, 9-5, in London. I now work remotely from home and around the world. I’m a blogger, author, a CEO of Disability Horizons, and consultant. Work is fun and keeps me financially independent.
8. Relationships
I’ve got in trouble for blogging about past sexual relationships. So I’m going to keep this general ?
Like with work, there’s no reason disabled people can’t find love and have great sex. But the fact drunk members of the public ask me if I can ‘shag’, shows we have a way to go.
Also like with employment, anyone you meet who is not able to love you or be with a disabled person, definitely isn’t ‘the one’. But after running Disability Horizons for 6 years, I know of so many disabled people doing just fine in that arena.
Simply be yourself. Enjoy life. Get out on the dating scene. Don’t let dating success define you though. And trust the universe to do the rest.
9. Great experiences
I love music, football and travel.
I’ve been to pub gigs, arenas, stadiums and festivals to see my favourite bands. I’ve seen Cambridge United (local team growing up), my beloved Tottenham, and England play football in many locations. I’ve visited the USA, Australia, Japan and travelled around Europe many times.
With the right planning, confidence, acceptance that things will go wrong, and passion. All leisure activities are possible.
I’ve even flown a plane, SCUBA dived, gone skiing, Husky Dog Sledged, gone in a hot air balloon, and lots more for my accessible travel adventures.
That’s me in the above image on a mountain trekker!
10. Learning. Forever
We all think that education stops when we jump off that train. Whether at 16, 18, 21 or soon after. Most people go to work and stop learning.
For me a fulfilled life comes from having new experiences, constantly learning, and always contributing. In the above tips I do all 3 – experience, learn and contribute.
Learning must be nurtured. I read a variety of blogs and books. I listen to a variety of podcasts and audio books. I watch a variety of Amazon Prime and Youtube videos.
Every bit of information provides me with new insights, ideas for new experiences, and ultimately an ability to give more back to the world. It’s an awesome circle.
Summary
Being a kick-ass disabled person is a silly, subjective statement. You are unique. Disabled or not. Plus disability shouldn’t define people, but it certainly impacts.
By ensuring you are independent with choice and control. By ensuring the world keeps getting more inclusive and accessible. By ensuring you have new experiences, new insights, and contribute with your unique talents. Well, we’ll all be better off for it.
Cheesy but true closing comment – Live your dream. It’s all in your head and in your hands. Good luck soldier!
Martyn