Born in 1960, Rosie’s impairment is four-limbed Phocomelia caused by the drug Thalidomide.
After graduating with a BSc., (Hons) Degree in Psychology through Cardiff University in 1985, Rosie joined the Civil Service and remained with the Department of Trade and Industry at Companies House Cardiff until 1993 at Executive Officer level.
In 1995 Rosie formed the RMS Disability Issues Consultancy, out of a genuine desire to deliver first-class training in the field of Disability Equality and Disability Issues.
Rosie received an OBE in the Queen’s New Years Honours List in 2015, “For Services to the Equality and the Rights of Disabled People.”
Rosie was awarded an Honorary Fellowship from Cardiff University in 2017.
Married, with one son, Rosie has a particular interest in radio, television and the arts. Rosie has been the subject of several documentaries. She has worked with the BBC, Sky and ITV, and can be heard regularly on BBC Radio Wales. She is a freelance TV and Radio Presenter.
How often do you hear, ‘what do the young people want?’ Perhaps not often enough. Certainly not as often as ‘how things have changed since my day!’
We wanted to hear from the next generation so we invited the multi-talented Abbi Brown on to our show. She works for the ad agency behind the now famous Malteser adverts on Channel 4.
With Abbi we explore whether you can make more of a difference from the inside or outside, who her (disabled) role models were when she was growing up and does she think there’s a disability movement these days. Indeed, what is activism these days, what are the next generation ‘fighting for’ if anything and does social media help or hinder? We also talk about using the bus and not thinking twice about it.
Abbi has personal experience of disability with OI (brittle bones) deafness and mental health problems.
The other day as I was shaving I remembered my mother, this often happens. I’m not sure why the act of shaving invokes these memories, but it usually does. My mother died back in 2001; it was a good death. She was lying in bed and asked her devoted carer, Chrissie, for a cup of tea, and when Chrissie returned with it, she had departed this life.
I recall that whenever I visited my mother particularly towards the end of her life, the first half-an-hour of our conversation was spent in cataloguing and discussing her ailments, aches, pains, and other trials and tribulations. She would sit in her velour covered armchair in her flannelette nightie with her nasal cannula in place and hold court. It was impossible to move her off health topics until she had exhausted every possible nook and cranny.
These memories were in part awakened because of a recent weekend I spent in rural Yorkshire with some good friends all of whom are now in their 60s and 70s. We all arrived at our host’s lovely old house and after the usual hugs and cuddles and comments like “you’re looking well” and “you look just the same” “you haven’t aged a bit” we all settled around the large kitchen table with cups of Yorkshire tea and a variety of other infusions.
It wasn’t long before the conversation turned to the various health conditions that several of us are currently managing. Five out of the eight of us were wearing hearing aids, three had had a hip replacement or were waiting for one, and we discovered that just about all of us now take handfuls of pills to keep body and soul ticking over. It didn’t matter how hard we tried over the rest of the weekend we kept returning to the subject and if we weren’t talking about the health issues we were talking about the gadgets and appliances we are using to fight off the ageing process. Automatic bottle and tin openers, Amazon’s Alexa, grab rails in showers and subtitling on television programmes all got a mention.
How does this happen? I don’t recall banging on endlessly about my health when I was in my forties. Is there some kind of switch that gets activated when we retire or reach our sixth/seventh decade?
I think in my mother’s case the process was gradual, but I think she became preoccupied with her health because her world gradually contracted as she aged. She rarely got dressed, hardly ever went out except to the hospital or the local doctor. She had few visitors, and the TV was her only window on the world. I recall that on one occasion my brother took her shopping in Croydon. They strapped her oxygen cylinders to her wheelchair and spent the afternoon travelling on the trams and visiting the shops in the shopping mall. When we next visited her general description of her latest health challenges took second place to the magic of Croydon. She had something else of interest to talk about!
So what of my friends and me in Yorkshire? We are all busy, we all travel and have a wide variety of interests. We all routinely access the internet, we all have grown up children plus grandchildren our worlds could hardly be described as contracting.
Maybe the problem is that if you have a peer group who are all in their sixties and seventies you have a shared history and you are all anxious about the same things like the gradual loss of your physical and mental faculties.
Perhaps part of the answer is to hang out with forty-year-olds? When I see my grown-up children, our conversations are all about what’s going on for them. I listen to their hopes, fears and dreams which are often wrapped up in things like mortgages, buying a bigger house, work, holidays, their children’s education and so on. These are all things that I have been through so can contribute my ideas and suggestions. Fortunately or unfortunately they aren’t going through what I’m now going through so they have no particular interest or suggestions to make. They care, but the topics are alien to them. The terrifying realisation is that I’m slowly but surely becoming my mother and my children are indulging me. How very depressing! Now, where did I leave my reading glasses and what should I be doing next?
Those of you who know me reasonably well will know that I’m a bit of a petrol head. I simply love driving! I know that’s not terribly cool theses days given the effects on the planet, but I blame my obsession on the fact that I’m a wheelchair user and as a result, I love the freedom that driving gives me.
In my time I’ve driven some pretty incredible motors. My journey started way back in the 1960’s with the appropriately named Tippen Delta 2 a three-wheeled invalid carriage supplied by the then Ministry of Health which preceded the Motability Scheme. I managed to overturn my aptly named “Tippen” on several occasions. These vehicles were primitive, unreliable and eventually banned from Britain’s roads in 2003 as they were deemed to be too dangerous! Those of us who survived this unique driving experience used to wonder whether this was a secret initiative designed to reduce the population of disabled drivers!
After seven years of crashing around in invalid carriages, I bought my first “proper” car a used two-seater sports car the MG Midget; a Porsche-engined VW Beetle followed, then a Saab Aero. I ended this extravagant period of my life with a BMW 5 Series, a Mercedes E class estate and finally a Range Rover!
The invalid carriage was an ill-equipped, unreliable and dangerous vehicle but I loved it. I still remember the pleasure and excitement of being able to go out when I pleased; I could go where I wanted and most of all I had control and choice. The Range Rover provided all of the same benefits but with leather seats!
As I’ve got older and my physical abilities have waned I’ve moved from walking on crutches to using manual wheelchairs and now to powered wheelchairs. This physical deterioration has had a profound effect on what vehicles I am now able to drive. The observant among you will quickly realise that you can’t fit a large powered wheelchair into most saloon cars. My solution has been to use wheelchair accessible vehicles (WAV) supplied via the Motability Scheme. So the wheel has turned full circle!
The Motability Scheme is a far cry from the old invalid carriage days and has provided complete driving solutions to hundreds of thousands of severely disabled people for years; incidentally, they celebrate their fortieth anniversary in May. I’ve variously leased through the Scheme a Chrysler Voyager, a VW Transporter and currently a VW Caddy. All accomplished, reliable vehicles but not quite BMWs although the costs including adaptations are not that different.
For many severely disabled people, their only real option for independent travel is the Motability Scheme, but the government’s recent changes to the benefits system are having a profound negative effect. Since 2013 51,000 people have had to return their Motability vehicles because they failed to satisfy the new criteria used to qualify for higher rate personal independent payments (PIP). It is estimated that the final figure will be closer to 150,000 returned vehicles. What lies behind these numbers are individual human stories. Disabled people are potentially losing their jobs because they can’t get to work, being prevented from seeing family and friends, stopped from going on holiday, reliant on others for medical appointments, shopping and leisure pursuits.
The Motability Scheme plays a vital role in ensuring that disabled people can live independently. For many of those who use the Scheme, it is the only way they can afford to lease an appropriate vehicle for their level of impairment. The draconian measures being used to reduce the benefits bill are having a devastating and disproportionate impact on the lives of many disabled people, for those who rely on PIP in order to fund their personal transport, the future looks very bleak indeed.
It’s one thing to have less money to spend, most of us have been through that, it’s quite another to also lose your ability to live independently.
Earlier this month I made my annual pilgrimage to the Mobility Roadshow, this year held at the home of British motorsport, Silverstone. On arrival, I bumped into a couple of old friends, one of the reasons I go. They recounted horror stories about parking a long way from the exhibition halls and having to wait for over an hour for wheelchair accessible courtesy buses.
Note to organisers; if you organise a major event where vast numbers of wheelchair users are likely to attend then locate parking close to the venue, preferably not on grass, if this isn’t possible then find another site!
After spending an hour familiarising myself with the layout of the Show, I began the search for the new kit. You know the sort of thing, wheelchairs that will climb bridlepath styles, powered wheelchair batteries that last a year and weigh less than a kilo, solar powered accessible vans, scooters that elevate so you can reach the top shelves in the supermarket. Sadly none of this was in evidence. More of the same old stuff, being demonstrated by less than enthusiastic sales teams who had an air of “I wish I were somewhere else” about them.
There was one headline grabbing piece of kit, called the Genny. As manual wheelchair users, we know how easy it is to get our small wheels stuck in pavement cracks or tramlines, the joy of dog poo on our hands, getting soaked because we can’t wheel around and carry a brolly.
The Genny is designed to eliminate these problems. It is a two wheeled powered device, based on the Segway, it’s full of gyroscopes and smart tech which enables the user to turn on a sixpence (remember those!). It climbs kerbs, goes across fields, you can carry an umbrella while holding hands with a loved one, and, most importantly, you look cool while you’re doing it. There is only one tiny little drawback the Genny cost around £13,000!
All in all, I found the Show somewhat disappointing, it felt jaded and lacked pizzazz and excitement. If the organisers want to ensure we’ll all come back next year, they must find ways of encouraging inventiveness and innovation. They could make a start by reducing the costs for smaller companies so that they can afford to rent stands to showcase their products.
Now where can I lay my hands on £13,000?
Almost forgot, here are the links to some interesting disability stories.
I’ve just returned from a lovely break in the Carribean. Winter in the UK or somewhere nice and warm? Not a difficult decision! Two weeks cruising on a luxury liner being spoilt rotten sounds like a good idea. Well like everything there is another side.
First you have to get to the Carribean. This usually involves a long haul flight of around eight hours on an aircraft that lacks accessible toilets. One of the fundamental rules of flying long distances is to drink plenty of water. Not advisable if you can’t visit the bathroom. Our flight out to Barbados was nine and half hour long, the seats lacked and any form of adjustment and were extremely uncomfortable. Once we landed I had to wait an hour to be off-loaded from the plane. We were then taken straight to the ship, bypassing customs and the airport terminal toilets; the journey lasted another forty-five minutes. Embarkation took around half an hour, so I went eleven and three quarter hours without using the loo! Much self-control and crossing of legs is the name of the game
Cruise liners are brilliant from an access point of view, and P&O’s ship the Azura is no exception. She has spacious wheelchair accessible cabins with roll in showers, lift access to all decks, swimming pool hoists making swimming possible for the most severely disabled passenger.
The trouble begins when you go ashore. Our ship was able to berth in all the places we visited, so there was no need to use tender boats. To appreciate the Caribbean islands you need to venture inland, unfortunately, very few tour buses are wheelchair accessible. The result is that mobility impaired people are forced to stay close to the port to while away their time in endless identical shopping malls. P & O do provide a list of available tours but on our cruise, the accessible buses that were available only had one wheelchair space. I saw, at least, a dozen wheelchair users so this provision was wholly inadequate. In one location they had provided a shuttle bus to get passengers from the ship to the town. Unfortunately, those people using wheelchairs, but who could walk a little, were refused access because there was nowhere to store the wheelchair. It seemed a little ironic that the very people the shuttle was designed to help were excluded from using it.
I do understand some of the places we visited do not have the resources to provide the kind of accessibility we have come to expect in the UK but what I find puzzling is why P & O won’t do more to cater for the increasing number of mobility impaired passengers. The last straw was we
left the ship in St Maarten to see a kiosk a hundred yards from the port entrance advertising wheelchair accessible tours.
Many disabled people find cruising one of the best ways of taking a holiday, it is possible to see places that you might not otherwise be able to visit. I’d be interested to hear about your experiences so please send me your comments and I will do my best to see they are passed on.
To end on a more positive note the sun shone beautifully, my tan has improved, my waistline has expanded as a result of the food being plentiful and excellent, and we met some fascinating people.
Here are some links to this week’s other news. I hope you find them of interest.
It now seems quite a while since Sue and I were sailing round the Norwegian fjords living in the lap of luxury. I have to say it was an extraordinary trip. I’m usually very sceptical about how accessible things are when people tell me that they are very accessible! I could not find fault with the ship (Ventura) and everywhere that non-disabled people went I was able to go to. (Sounds a bit like the nursery rhyme involving Mary!) During our voyage we spent four days in various ports along the coast of Norway notably Bergen and Stavanger and two ports inside the fjords themselves. All except one of these was fully accessible. On this occasion the ship had to anchor in the middle of the fjord and passengers were taken by tender boat from ship to shore. It was not possible for wheelchair users who cannot transfer from their wheelchair to the boats to go ashore at this destination. We knew this was going to happen as it was clearly stated in the accessibility instructions which were sent to us before we sailed. We were therefore able to enjoy a day on board doing a variety of other things while at shipmates went on seven-hour coach trips which by all accounts were very beautiful but very tiring. The accessibility of the vehicles that were used to take people on excursions did present some difficulties a number of them could accommodate wheelchair users but given the number of disabled passengers the great British queue was much in evidence! I’m sure that over time this will improve.
It was great to see so many visibly disabled people on the trip. I stopped counting when I got to 30 wheelchair users and I saw at least nine sight impaired people with white canes. In my experience it is extremely rare to have to queue behind numbers of wheelchair users in order to get a table in a restaurant! The only other times when I’ve come across this has been when I’ve been living in an institution or waiting for an accessible vehicle! Clearly P&O have got something right. It was also good to see so many younger families on board; given the variety of entertainment available this was clearly no accident. There were a large number of older people on board but it does seem to be something of a myth that cruises are the preserve of older people. As you have probably gathered this trip was a huge success for both of us so when the brochure came out announcing P&O’s world cruises Sue and I did not resist and promptly booked a trip from January to March 2011. All we’ve got to do now is save the money to pay for it.
Well the 31st July 2009 will be a momentous day for Simon and me. This is the day that the Minty & Friend Ltd closes its doors for the last time. As many people know this has largely come about because of our mutual desire to develop our interests in different directions. It has been a tremendous 10 years and we have done some pretty amazing things together. I’d like to think that we have contributed a number of innovative ideas to help drive the agenda of disability equality forward. I guess most notably concepts like Dining with a Difference, Acting on Disability, Abnormally Funny People, the Reasonable Adjustments Assessment Service they are all projects which Simon and I have both thoroughly enjoyed and are very proud to have been involved with.
It will also be very sad not have quite the same level of contact with those of you who have been on the journey with us. We both intend to stay in touch and any work that comes our way which would be more appropriately done by one of you we will of course pass in your direction. If you have projects which you think Simon or I might be able to help you with we’d be delighted to explore this with you.
Well by this time next week Sue and I will be well on our way to Norwegian fjords aboard the cruise ship Venturer. I’m really looking forward to this trip I’ve heard so much about cruising from friends like Kate Nash and Jane Campbell. Both of them describes their cruises as absolutely fantastic. Accessibility on board the ships is reputedly extremely good and I’m looking forward to testing this out for myself!
On the subject of wheelchairs which we vaguely were I’ve been trying out a number of all-terrain powered chairs this week with a view to buying one of them. There is no doubt that the chairs I’ve tested will go across all sorts of rough ground, the only real problem is that they are not very manoeuvrable in confined spaces which makes it quite difficult to load them into my Chrysler or my motorhome this does present a serious problem as the only reason for buying such chair is to enable Sue and me to take them on holiday in order to go across rough terrain. The second major issue is the cost of these chairs one of them I tested would cost £14,000 which is almost twice the amount of money my son paid for his Renault Clio! I am continually amazed at how much equipment costs for disabled people. I find it very difficult to believe that we can make cars cheaper than we can make powered wheelchairs or for that matter lightweight wheelchairs! Some fairly standard lightweight sports chairs cost more than some racing bikes and yet the engineering is not that different. Manufacturers generally complain that it’s about the small volumes nonetheless I’d be really interested to find out what the actual cost of making a powered chair is compared to the amount of money they’re sold for.
Anyone out there got any thoughts on this issue.
Well it’s time to start packing!
I’ll update on my trip when I return. In the meantime I hope the sun is shining where you are.