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Category: Fighting for Change

Wheelchair Woes . . . Sadly Continued

Posted in Accessibility, Cerebral Palsy, Cerebral Palsy Sport, Customer Service, Equality & Diversity, Fighting for Change, Personal, and Wheelchair

If you have read my last blog, you’ll be aware of my current wheelchair issues and the frustration it’s causing.  At the time of writing my last blog, I stupidly thought I was nearing the end of my issues. Little did I know there was further drama in store.

Frustrated by being told I’d have to wait over two weeks for a part to be shipped from Germany, I decided to pile the pressure on to the manufacturer, Invacare, with regular tweets and emails – highlighting how not having a functional wheelchair was severely impacting upon my independence – please follow @ACBlackborough if you don’t already!

Invacare’s responses were typically along the lines off “we’re sorry and we’re looking into it” which wasn’t really cutting mustard with me at this stage. But then I receive an email, telling me the part would be dispatched that day for delivery tomorrow. Though obviously very happy that two weeks had been reduced to a day, it begged the question why this hadn’t be done to start with? A question which Invacare have declined to answer.

Despite this, I was thrilled at the prospect of getting my wheelchair, and my independence back, after just shy of 5 weeks.  My excitement was dashed when the dealer phoned to break bad news – the part had duly arrived as stated but it was faulty.  After so long, I was unsurprisingly fuming.

Again, Invacare said another part would be despatched for next day delivery. In the five weeks without my wheels, my life had effectively been put on hold. I’d had to cancel numerous plans including work commitments. My spare chair, brought at further expense, is very basic – limiting me to local, essential trips only and even a basic requirement like food shopping, has been really problematic.

So you can imagine my joy when the wheelchair was finally returned to me last Saturday afternoon.  I made plans for the coming week and promised my little boy some trips out.  I committed to attending a meeting in Nottingham, where I am proud chair of Cerebral Palsy Sport.  Life could finally return to normal. Or so I thought.

As soon as I took the wheelchair out, I noticed the battery was behaving oddly – dropping power almost immediately.  Having used electric wheelchairs for the best part of 20 years, I was pretty sure something wasn’t right but I decided to give the chair a couple of long charges before reporting a problem.  Again, I felt limited as to what I was able to do and decided to carry the charger with me, just in case.

When I arrived in Nottingham, the chair was displaying low power so I plugged it in during my meeting and phoned the dealer – Easy Living Mobility – who have been amazing and arranged to visit me the next day.  Despite charging the chair at work, I only just made it home that night – with the chair giving up the ghost on our driveway.

The next day confirmed my fears – the battery was most probably failing and the wheelchair would have to be taken away again to be tested. I’d have to wait 4-5 days for new batteries.  I was utterly fed up – my plans for the next few days turned upside down YET AGAIN.

And what do I get from Invacare?

“We’re working with the Invacare Retailer to resolve this as quickly as possible.”

No apology, no concern for how I’m coping without my lifeline.  I count this now as six weeks – for six weeks I’ve been without a reliable, fit-for-purpose wheelchair but it really seems like Invacare couldn’t give a damn.  They have my money – almost £8000 – and beyond that isn’t their concern.

I’ve only had my wheelchair for 9 months and due to various faults, it has been out of action for 2 of those months.  Considering they talk about keeping people mobile as part of their marketing, I think most would agree that Invacare is failing, miserably.

Wheelchair Woes

Posted in Accessibility, Cerebral Palsy, Disability Aids, Disability Awareness, Fighting for Change, Making a difference, and Wheelchair

 

I recently tweeted about how frustrating life can be as a disabled person but how incredibly grateful I am for having such supportive family and friends. Life as a someone who is reliant upon an electric wheelchair can be very frustrating, particularly when things go wrong.

Almost three weeks ago, I had planned an afternoon out at the park with my little lad and his cousins.  It’s rare that they see each other and I was looking forward to time with my nephews and niece.  But on the way to the park, my wheelchair started cutting out suddenly. I’d turn on the power button again, only for it to cut out again after a few hundred yards. With four children in my care, I didn’t feel safe or in control. Luckily, we were meeting friends at the park but I also rang hubby to walk us back.  The chair progressively got worst and eventually, it wouldn’t move more than a metre without failing.  Hubby resorted to pushing me home and the happy, relaxing day I’d planned ended in frustration.

The wheelchair had only been purchased late in 2017, as I’d decided to leave the Motability Scheme, ironically due to slow and extremely poor customer service.  Unluckily still, the company I’d purchased it from had gone out of business a month after my purchase, meaning I had no support in such instances.  So I found a company, Northwick Associates, who unlike so many companies, were able to come out to me that day.  They seemed to understand the urgency of my predicament.  Unfortunately, the engineer who visited was unable to pinpoint the problem despite his 2 hour visit. Nevertheless, he promised that another engineer would be sent as soon as possible.

Two days later, another engineer arrived who seemed to empathise with me and understand that my electric wheelchair is the absolute key to my independence.  He’d spent time the night before his visit studying the wheelchair manuals to try and find the problem.  With some wriggles and jiggles, it seemed he had cleared the error and just to be sure, I did a short test drive and the chair was back to normal.  I was over the moon to have my independence back – it’s hard for me to convey the relief knowing my life is back to normal. Some may think I’m exaggerating but imagine someone taking your car keys or your wallet – how would that impact upon your life?

But my joy was short-lived as the next evening, Friday, the chair began cutting out again as I went to visit my parents. I rang Northwick again only to be told that unfortunately no engineers were available until Monday – at the earliest.  Imagine your car breaking down and phoning the AA or RAC, only to be told you’d have to wait two days for any assistance?!

I should explain that due to previous issues with my wheelchair, we did purchase a very basic back-up replacement in January just to ensure that I’d never be totally housebound. I soon realised though that it was literally to allow me to do the essentials locally – it is very basic and has very little umph!  Try going from driving a brand new Mercedes to a Fiesta and you’ll be on my wavelength.

Monday morning arrives and I’m on the phone again to Northwick but as timing has it, the engineers are on training and unavailable to visit until Wednesday – when not one but two engineers arrive.  Surely between them, I thought, they would identify the problem?  Unfortunately – I’m using that word a lot – they concluded that they would have to take the chair away to strip it down.

I was truly exasperated at this point – if only I’d known how far I was from a conclusion!  Three days later the engineer texted to say the fault had been found, repaired and the chair was ready. Hubby and I decided to collect it ourselves as to save some time.  Once again, the relief of getting my Mercedes back was immense!  But hubby aired caution when I mulled over a solo trip to town.

Wisely so. The next day, as I returned from the local shops, the chair started behaving weirdly – but not quite as before. I hoped it was me imagining the worst until the next day. I was doing the school run and got as far as the school grounds when the chair cut out totally, just as before. My little boy’s teacher approached to see if she could help and I had to try so hard not to disgrace myself in front of her but instead I fought to hold back tears as I tried to explain.

Having managed to get safely home thanks to hubby and a friend, I knew I needed to compose myself before once again phoning Northwick. I should stress I didn’t blame them as they had been more responsive than anyone I’d dealt with in the past, but I was to put it mildly, very frustrated at this point.

Northwick admitted they were now at a lost and offered to contact the manufacturer, Invacare, on my behalf as the chair was still under warranty. Another few days are lost until they send out an engineer.

YET AGAIN, I’m told the chair will be taken away for a thorough investigation. My only consolation is that I’m informed now that the warranty should cover it.  I’m sort of pleased to say the fault has finally being identified, but wait for it. Here comes the icing on the cake.  The replacement part I need isn’t stocked in the UK and has to be ordered from GERMANY. Yes and it was only ordered yesterday. And, oh yes, they are unable or more likely, unwilling to give an expected time of arrival.

Three and a half weeks without my wheels, my independence, my ability to travel and take my little boy to school safely – and that’s all I get.

I saw a tweet quite recently that essentially implied that disabled people should be grateful and satisfied with the progress this country has made in the last two decades to improve disability equality.

I’d have to respectfully disagree.

Open Letter to Uber: Your failure of a Disabled Customer

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Equality & Diversity, Fighting for Change, Making a difference, Media, Personal, and Public Transport

Last weekend was rare for me. I was really looking forward to a short break in London, visiting one of my oldest friends and my sister. I have Cerebral Palsy and a four year old son, so taking a break is a real treat.

We’d arranged a night out and as a wheelchair user, this takes some planning but my best mate had it all in hand. As there was a large group of us, we booked two of your taxis in advance. One to take the majority of our group and the other, an accessible vehicle to accommodate me and my friend; we even got a text to confirm our booking.

As I believe is your standard practice, five minutes before our requested slot, we got another text indicating that you were on your way. So we piled outside just to be ready and the other taxi for our friends arrived. However, our advanced booked accessible vehicle was nowhere to be seen. We waited and waited. No more texts pinged and still we waited. Half an hour later, it was evident that we had been forgotten. There was no way of contacting you to let you know that a vulnerable, disabled customer had just been left high and dry. For had I been alone (as I mostly am in my travels around the country), that’s exactly what I’d have been. Alone and vulnerable, with no way of letting you know of your unforgiveable mistake. Luckily for you, I had my friend to ensure that I wasn’t just left on a dark street, in an unfamiliar city with no way of getting to my destination.

In case you’re interested, we did eventually get to where our party had been waiting over an hour. However, because we couldn’t get an accessible cab, I had to go without my electric wheelchair, which made it difficult and took the shine off what should have been a great night out with my friends.

But I’m afraid my complaint doesn’t stop there. Your initial response when my friend made contact was, as he described it, lacklustre:

So sorry to hear that you did not meet your friends on time.

Although you have requested uberAccess in advance, unfortunately, there’s no available driver-partner to accept your requests that is why it was unfulfilled.

Feedback like yours helps us optimise the pickup experience. We appreciate your patience and understanding.”

 

So if there wasn’t a vehicle available, why did we receive a text five minutes beforehand?

And secondly, you don’t have our patience or understanding. You left us waiting, with no way of contacting you or of getting to our destination. And you ruined our night.

Your response shows a total disregard and ignorance for what you actually did which was to ignore the request of a vulnerable, disabled wheelchair user. Had I been alone, I wouldn’t have known where to go or what to do.

In further correspondence, you go on to suggest we may have misunderstood how the Uber App works and the messages it generates. This is your issue, not ours and the fact remains you have let down a disabled customer at a time when your very presence in London is under threat.

Cerebral Palsy: The good, the bad and everything in between

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Education, Equality & Diversity, Fighting for Change, Flyinglady Training, Making a difference, My writing, Personal, Social Model of Disability, Uncategorised, and World CP Day

This is my life, my feelings, my achievements and frustrations of living with Cerebral Palsy

Campaigning – I’ve spent the last ten years supporting and campaigning for the rights of Disabled People. I ran a campaign to improve the accessibility of my local area – taking it as far as No. 10 Downing Street.  Find information about my “Great Barr Great” Campaign here

Exhausting – Having CP means every day tasks can take me longer and I get tired easily. But I don’t let it stop me!

Rebel – You tell me, “You can’t” and I’ll tell you, “Just watch me!” I thrive on proving people wrong and achieving what might be considered the impossible!

Exciting – I truly believe my life wouldn’t be as fulfilling and as exciting as it is without my Cerebral Palsy. Life has taken me down many exciting paths so far and I’m grateful for that.

Brave – Please don’t call me brave. I’ve always had CP and I’m just living my life the only way I’ve ever known – I’m not brave or special. I’m just Aideen.

Regrets? – Would I have a life without CP if I could? Not a chance. It’s made me who I am and I wouldn’t change that.

Awareness – My training business is focused on raising awareness of disability and making life easier for other disabled people by changing attitudes. And believe me when I say, here in 2017, that there’s still a lot of work to be done in changing how people view disability.

Living – I’m just trying to live my life. I hope World CP Day will make that a little easier by making people more aware of CP and it’s implications.

 

Passionate – I’m guessing you know by now the passion I have for making a difference to the lives of others with disabilities. The Social Model of Disability made huge headway in changing the way society views disability but unfortunately, discrimination is still occurring regularly. This has to change and disabled people have to be put on an equal footing with everyone else in society.

Accessibility – Getting around in a wheelchair is far from simple and I think I’m getting a name for myself in trying to identify and put right the problems! The Equality Act 2010 intended to address such issues and yet I still find accessibility issues a major barrier to me leading a “normal” life – whatever that is!

Lonely – I don’t mean this in the traditional sense, but sometimes it can feel quite lonely fighting for change and it can feel like an uphill struggle. World CP Day is an opportunity for people to pull together and raise awareness in oppose to being a lone voice, as it often feels.

Scary – There are times, when as confident as I am, having Cerebral Palsy can be scary. When I’m meeting someone new and not sure if they will understand my speech; when I’m in a new environment and unsure how others will react to me. Awareness of CP really helps take away that fear.

Yes – My mum always told me there was no such word as can’t so if I can find a way to do things, the answer is always yes!

 

See what I did there?!

 

If you or someone you know has CP, please get in touch and if there’s anything I can help you with just let me know.

Corporate training and support also available – please contact Flyinglady.

Building an inclusive, more tolerant future

Posted in Accessibility, Disability and kids, Disability Awareness, Education, Equality & Diversity, Fighting for Change, Media, and Schools

I just posted on my Flyinglady Website about how I love going into schools and doing Disability Awareness sessions for the children; I’m so passionate about it that I offer the sessions for free wherever I possibly can.

The sessions help kids to understand that everyone is different and that’s a good thing; life would be incredibly boring if we were all carbon copies of each other.  I go on to try and help the kids to understand how they help people with disabilities and explain how including everybody is so important.  Inclusiveness, in simple, age appropriate language.

Now, as I sit watching the news of yet another, hate driven, evil terrorist attack, I feel despair the same of everyone else. I fear for my little boy and a friend tweets her advice that “All we can do is be the change and teach our children better. The majority of people are good.”

And we are.  The world is full of good, kind, peace loving people and we need to teach our kids – our future – to be the same. Teach them that it’s OK to ask questions, to be curious and that they must be accepting of differences. We need to teach them from a young age about diversity and that age, sex, disability, ethnicity, sexuality and religion make each of us who we are. We’re all different, all unique but ultimately, we’re all human beings and that’s the bottom line which needs to be respected.

So let’s have Disability Awareness on the curriculum but let’s also give Equality and Diversity generally a higher priority from a young age.  Let’s invite a range of people, from all walks of life, to give presentations to schools and allow our children to explore these issues. Let them ask the questions that perhaps their parents would struggle to answer. Let them learn from personal experiences, not just teachers and books.  Perhaps adopting such an approach will help us create a much more tolerate society for our future.

Why I love being a trustee of Cerebral Palsy Sport

Posted in Cerebral Palsy, Disability Awareness, Disabled Access, Does it wet the bed?, Fighting for Change, Making a difference, My writing, and Personal

At the book launch of my memoir, Does it wet the bed?, someone happened to mention to me a Charity, Cerebral Palsy Sport and how they were looking for new trustees. I almost dismissed the idea; I had never been a sporty person, much to my regret. I wasn’t sure how much I’d have to offer such a charity.

Then I thought back to my time working for another disability charity who focused on helping disabled people into employment.  As an employee, it was sometimes frustrating as I’d have a vision for how I thought the organisation should go but no real authority to influence it’s direction.  When the charity struggled financially and my job was hanging by a thread from month to month, all I could do was do my job and hope funding would come our way – even though I had endless ideas for stabilising the charity and indeed, expanding it.

So I realised it didn’t matter that I didn’t spend my weekends by the side of a pitch – what mattered was I had the drive, the passion and the enthusiasm to make a difference to a charity. I could help other people with Cerebral Palsy to reach their sporting potential and that was what inspired me to apply.

I was thrilled to take up my role as Trustee last January and though it’s a big responsibility, I can honestly say that I’ve loved every moment so far.  I’ve put my current skills to good use and am continually developing my skills and experience, which will only strengthen my CV.  I’ve met some brilliant people and most of all, I hope, I’ve made a difference for the people using our services.  Every day is different, challenging and rewarding – even it is just a simple “thank-you” and a smile.

Yes, the role takes up my time. The usual commitment is 6 Board Meetings per year, plus 4-6 Sub-Committees Meetings per year but if you have this time to give, there’s nowhere better to give it! All your expenses will be paid and you’ll be invited to some brilliant sporting and fundraising events that are family-friendly and lots of fun!

So why not come and join us?!  To apply to be a trustee, please follow this link or you can contact me for a chat if you’d like more information.

Disability Etiquette equals good manners & common sense

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability Aids, Disability Awareness, Disabled Access, Equality & Diversity, Fighting for Change, Flyinglady Training, Media, and Personal

My latest book, “A disability Etiquette Guide” is something I’ve been wanting to write for a while now and last week, I was reminded why it’s so important for me to write it.

I was on my way to Nottingham, to the Charity CP Sport, of which I am a proud trustee. I asked for the ramp to be put down  as I use an electric wheelchair. It’s a popular train but I was absolutely astounded by my fellow passengers, who proceeded to rush on to the train whilst the customer service guy was attempting to put the ramp into position for me.

They all rushed past him and me, desperate to claim a seat and a place for their luggage. Never mind thinking about me and how it might be easier for me to get into the wheelchair spot when the carriage is relatively clear of passengers and luggage.  Never mind simple manners and common sense.

One passenger even walked up the ramp in front of me! Unbelievable!

And that’s the essence of my book: Good manners and applying common sense can go a long way in improving the lives of those with disabilities.

Yes, I’m Disabled but don’t think I’m stupid

Posted in Cerebral Palsy, Disability and kids, Disability Awareness, Disabled Parent, Does it wet the bed?, Equality & Diversity, Family, and Fighting for Change

It’s 2016 and I’ve now been living with Cerebral Palsy for 33 years.  Attitudes towards disability have changed and largely improved over that time. Yet, it still amazes me how ignorant some people can be and resist being educated.

Yesterday, I was out and about with my mum who has always insisted that she will not speak for me – if somebody wants to know something, they can ask me, not her. As we waited for a bus a fellow passenger asked mum if I was her daughter. Mum politely confirmed that I was, before being asked the old age question, “How old is she?”

I quickly told the woman my age, hoping she would get the message that just because I have a disability, it doesn’t mean that I can’t speak for myself. Far from!  Anyone who knows me or has read my memoir, will know I have my own views and opinions and that I’m not shy in voicing them!

I was hoping to have made my point with this lady but sadly she hadn’t got the hint. She continued to quiz mum about me as if I wasn’t even there! Having experienced this type of ignorance more times than we would have liked, Mum and I were both mildly irritated but also amused by the woman’s inability to take a hint.

Mum decided to put it bluntly: “Actually, SHE is a university graduate with a 2.1 honours degree and is also a married with a child of her own!”

“Where’s her child now then?”

Argh!!!! Some people will never understand or even attempt to put themselves into my shoes but if you’re the lady at the bus stop reading this, let me say this:

 Yes I am disabled, No that doesn’t mean I can’t think or speak for myself, and No it doesn’t entitle you to ask me personal questions that are none of your business!

How many other complete strangers at the bus stop did you ask their age?!

A little bit of knowledge . . .

Posted in Customer Service, Disability Awareness, Disabled Access, Equality & Diversity, and Fighting for Change

As a disabled person, I consider myself to be fairly lucky.  Yes, I face physical challenges on a daily basis but they haven’t stopped me from living a fulfilling life, getting a good education, raising my own family or running my own training business. I was fortunate enough to be born at a time when people’s attitudes towards disability were beginning to change and being disabled wasn’t seen as such a tragedy.

But, even now, some thirty years on, some people’s attitudes are firmly stuck in the past, in a time when the Medical Model of Disability dominated and disability was viewed as an individual problem, rather than a challenge for society to overcome.  In the space of just a few weeks, I’ve experienced three different incidents where customer facing staff have failed to cater for my disability, causing upset and distress.  In the first incident, the staff member didn’t have the patience to just listen to what I was saying, instead expecting a family member to speak for me.  In a second, similar incident, the staff member made absolutely no effort to understand me and refused to let me talk to another member of staff. With the third incident, I was made to feel like a nuisance simply because I required a ramp in order to access a service.  In all three cases, it was absolutely clear that the staff members hadn’t received Disability Awareness Training or at most, had fallen asleep in the middle of it.  This despite the fact that disabled people in the UK have a huge spending power (£80bn I’m told) so an investment in such training would pay off in no time.

So yes, I still consider myself lucky, but it is attitudes which still need to change.  A little bit of knowledge would go a long way in improving the lives of disabled people even more . . .

Ten misconceptions about people with disabilities

Posted in Accessibility, Cerebral Palsy, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Fighting for Change, Flyinglady Training, Making a difference, and Personal

 

 

  1. Disabled people need someone to talk for them

“Would she like a drink?” or “How old is she?” were common questions posed to my mum when I was growing up.  People assumed just because I am disabled that I can’t speak for myself. I soon piped up with the answers, making sure they knew I had a mind of my own!

 

  1. We need to have a “carer”

Disabled people may need assistance with some daily tasks but it shouldn’t be assumed, as is often the case, that we need full time care. Before getting married, I lived completely independently in my own flat and I am very capable of looking after myself.

 

  1. Disability prevents you from leading a normal life

Disability doesn’t exclude normality! I’ve achieved all the things that anyone else might expect to achieve, my disability hasn’t got in my way.

 

  1. Disabled people aren’t capable of being in employment

This simply isn’t true; there are countless jobs that disabled people can do – employers just need to start putting ability before disability! I held down a full time job for seven years before becoming self-employed and I helped dozens of other disabled people to find employment.

 

  1. People in wheelchairs can’t walk at all

I love the looks of surprise I get when I get out of my wheelchair in the company of strangers!  Wheelchairs are often used because walking is difficult, not because it’s impossible.

 

  1. Disabled people aren’t able to become parents

Being a disabled parent presents additional challenges but with time and thought, these can be overcome.

 

  1. Disabled people will pass on their disabilities to their children

Not all disabilities are hereditary so in many cases, it isn’t possible for a disabled parent to pass on their disability.

 

  1. If you have a disability, you must be on medication

Although medication can sometimes help to control some symptoms of some disabilities, it shouldn’t be assumed that all disabled people take medication. And it definitely shouldn’t be assumed that we can’t enjoy a tipple or two!

 

  1. If you are born with a disability, you’re extremely brave

Lots of people have said to me, “You’re so brave.”  But I don’t see myself as brave because I’ve always had a disability and it’s part of me – I wouldn’t know any different.  If you have a disability, you just get on with life in the best way that you can.

 

  1. Living with a disability is always bad and negative

Far from!  Speaking personally, I wouldn’t change my situation for anything, my life wouldn’t be as good without my disability. Although I’ve experienced discrimination and ignorance, the positive experiences far outweigh the bad.

 

If you have a disability and could add anything to this list, please contact me.  If you’re interested in Disability Awareness Training,  please contact Flyinglady Training.