“Of course you can’t go to a concert, festival or any type of big event Vanessa you have got Osteogenesis Imperfecta”… the word ‘No’ has been imbedded in all of us that have O.I for our whole lives. The answer is always no you can’t, or no it’s too dangerous – and yes, sometimes that is the situation,= but also its only dangerous if you don’t be smart or safe about it. So, my answer back has always been ‘Why Not?’. Yes, there are a lot of things that we need to take into consideration having O.I a lot more than the average person I know, but it’s not impossible. I’m going to share with you all how I got round these obstacles, because of course you all know by now that I was and still am determined to live a ‘normal’ life.
First things first, I’m not going to lie going into a big crowd still, and always will, terrify me, especially because of my small stature. I feel like I am in overdrive… constantly having to be on the lookout for any potential hazards, anyone that could bump into me or basically anything that could cause me to have a mishap. It is super scary at first but it doesn’t have to stop you if that’s what you want to do, we shouldn’t have to miss out on ‘normal’ fun activities that we can enjoy just because we have O.I.
When going to any event, concert or festival etc, I will always book any disabled assistance or seating or whatever they have available. Now don’t get me wrong, when I was younger, I never wanted to, as I struggled with accepting the fact that I had to be a little different at times. I was always scared of missing out, but in actual fact I realised that it’s so much easier asking for that extra help and its way more beneficial. I now think to myself, if I live with O.I why not take anything and everything that is going to make it easier – I think we will all agree that we totally deserve any perks that we get. I think my friends love it more than I do, they are thinking that we are the Kardashians, getting the V.I.P treatment everywhere we go. Most places are very good with accessibility and you’re always guaranteed to be closer to the front and get to skip all the queues, if that’s not a win win I don’t know what is…
Last year I went to an outdoor camping music festival but instead of camping, myself and my friends booked into a house down the road from it and stayed there so we could still go to the festival but have the luxury of sleeping in a proper bed… everyone agreed it was the best decision we made. Was I annoyed that I didn’t get to camp like everyone else? Absolutely not! Camping is totally not my thing anyways so that part didn’t bother me. Was I scared of the huge crowd and alcohol etc being involved too? Yes of course I was, but again, we were just smart about it. We stayed in the ‘V.I.P’ box and my friends went and got us drinks or anything I needed so I didn’t have to make my way through the crowd, and you best believe that I used every disabled toilet and got an escort to the toilet if we felt like we needed it.
If you ever feel overwhelmed ask for that extra help, it is there for a reason. I have to say, my friends and family are always so good to me if we are out and about, I don’t think I would be half the person I am today or have the confidence to be out and about without them being by my side and always looking out for me no matter what.
Never let your disability stop you from doing and experience life to the fullest that you possibly can.
Direct Payments
They say that “Those that shout the loudest, get heard first, but it’s the ones that speak softly to the heart, that get remembered”. It pays to be kind and to be sincere towards others and shouting will usually get us to the back of the waiting list or conveniently ‘forgotten’. Sometimes though making a good old fuss actually pays off!
Since moving to London over six years ago I have faced many barriers and had to fight for my benefit entitlements. I still get a shiver down my spine when a confidential brown letter arrives in my letter box: “Here comes another benefit cut…”. Many of you reading this will relate to that.
One of my most stressful battles has been securing my carer Direct Payment. For those of you who don’t know, “Direct Payments” are a Government initiative that, in theory, gives service users (i.e. me) money directly to pay for their own care, rather than the traditional route of a local authority providing care direct. This is supposed to give the person receiving the care more autonomy. Sounds pretty straight forward, right? Wrong!
You’ve all read about the “postcode lottery”. Different local authorities have different budgets. Unfortunately for me, London and its many boroughs struggle with the high numbers of people requiring help and it can be hard to get past the obstacles in your way.
The first hurdle is proving you actually need care. You have to be assessed – sending a picture of you in a wheelchair or in hospital isn’t enough. The assessment process can be unpleasant with questions ranging from your bladder habits to your mental health. Once you’ve been assessed by someone (who may not be a qualified medical professional and might have little knowledge of disability) they decide how many hours of care you qualify for. You may think you need 24 hour assistance but the local authority may not agree! In the past the carer could take you out for social events, like the cinema, shopping meeting friends etc. Now the provision is limited to personal care such as dressing, bathing, and preparing food.
Another problem with the Direct Payment system is that some local authorities require the service user to contribute towards their assistance even if they are not in employment – the postcode lottery again.
However, don’t feel desperate, frustrated or defeated. After reading my story you’ll hopefully see that there is light at the end of the tunnel.
Before I came to London, I received 21.5 hours of care time under the Direct Payment system. This enabled me to live an independent life and though I was in full-time employment I was not required to contribute because the local authority funded all my care. I was therefore able to budget for any unforeseen broken bones. After the move to London and another assessment, I was denied any hours, with one assessor pointing out that as I could use a microwave I was self-sufficient. I appealed and was awarded 3 hours and two years later a broken femur “boosted my needs” and that was increased to 10.5 hours but I had to contribute £21 a week. Only when I moved boroughs again did I decide that I was going to fight for everything and push for more help. After yet another Direct Payment assessment I was awarded 15.5 hours but my contributions were increased to £57 a week. I felt penalised for moving to better accommodation so I appealed again. I was successful – the 15.5 hours of care time stayed the same but my personal contribution was removed, saving me £228 a month!
So here are my top tips for appealing against Direct Payment decisions:
This will get personal
You are going to have to share some of your most personal information and you will feel vulnerable. In essence you have to list all that is ‘wrong’ with you rather than being proud of what you have achieved. To win the ‘game’ you need to stay strong and keep reminding yourself of the end goal – your independence.
Don’t assume
I don’t mean this in a disrespectful way but when you are writing the appeal letter don’t assume any particular knowledge of disability among the members of the appeals board. Give as much detail as you can about your condition and how it affects you and those around you (friends, family, work colleagues). Be completely explicit.
Give statistics
The charity SCOPE did a survey in 2019 on extra costs incurred by people with disabilities. Write those statistics into your appeal. You can’t argue with concrete facts!
Play to their Human Side
Show them you are a person not just a number but someone that deserves autonomy, independence, freedom to live as an integral member of society. Without your carer you cannot go to work, or have a social life. Give examples of times you have not been able to get shopping, go to the toilet or not managed to get to a job interview.
Evidence, Evidence, Evidence
Keep a diary and receipts of even the most insignificant things. What do you spend your money on? This can be anything from electricity bills to extra tampons. You may use more electricity from washing clothes that rub against your wheelchair or charging your electric chair every night. New clothes may get damaged by your wheelchair or when the doctor has to cut you out of them when you break an arm. You may need to buy new bedding and use more washing powder because perspiration is a common symptom of O.I. Go through your daily routine and pick out all the extra cost you have, big and small. State how inaccessible public transport is and that you need to rely on others to get around and the added cost of petrol or taxis. Wheelchairs cost a lot in maintenance (e.g. new tyres) – I keep every receipt from every flat tyre. I highlighted that pavements with glass and pot holes meant my wheelchair got flat tyres. Do you get pressure sores or rubbing from plaster casts? Do you need ointments and creams that aren’t covered by the NHS? Do you need additional equipment such as a sliding board or cushions for support. Keep receipts!
Remember mental health
This can still be a taboo but it’s vital for you to mention your mental health in your appeal. Remember it is completely confidential and can ultimately help towards increasing your hours and reducing your contribution. Anxiety and depression at times can be as debilitating as having a broken collar bone so say so.
Be Thorough
If they are asking you to make a contribution, clarify where this money is going and point out that you need emergency funds for care at weekends, bank holidays or from agencies. Find out the hourly rate of local care providers and highlight this in your appeal.
Never forget your worth
You are entitled to help and you will show them that you won’t settle for anything less.
Be strong, stay firm and shout loudly!!! (AND KEEP RECEIPTS)
Hello BBS Community!
Transport Experience
I’ve been asked to write a blog around public transport, and any advice I can offer to those that aren’t so confident in taking it, as well as useful bits of technology that better help me to navigate around London and beyond.
I would like to say that I have it all sussed after many years living and working around London, but I’m writing this blog after a week of delayed and terminated trains, overhead wires coming down, broken disabled toilets, and missing platform staff with ramps, so the first thing to say is – as much as there are things along the way I have learnt to make travel easier, it’s still by no means perfect and it’s important to try and stay calm when things outside of your control have transpired against you.
Trains
Most trains I take aren’t able to be planned too far in advance, so I don’t generally book assistance through the national passenger assistance. I use apps like national rail and Citymapper to plan my route and then on arrival at train stations I make sure I find someone who can organise a ramp to go down for me to board the train, and disembark at the other end. On boarding the train, I reiterate where I’m headed (yes, they do sometimes get the station wrong), and then on arrival at my destination, I make sure to enlist the help of fellow passengers should there be no one ready and waiting to get me off. To ensure that the train doesn’t depart before I’m off I usually get one person to hold the door and another to go down the platform and try and find someone that looks like they work there. If that fails there usually is a passenger alarm switch for disabled passengers if you’ve been put on the appropriate coach.
Buses
To my knowledge, all buses in London are now accessible, and provide a great way to accessibly get to places that trains or the underground can’t get to so easily.
There has been a reasonable amount of press coverage of the wheelchair spaces on buses and who should have priority if a pushchair is already in the space when you board. I usually find that most passengers and drivers are quite human about the whole situation, and if they can get everyone on at the same time they will. If they can’t, having the patience to wait for the next bus can be important as there only is the one space!
Usually the next bus is better!
I use google maps to plan my bus routes, and to see when the next bus is due, but this doesn’t seem to be an exact science – and after waiting a long time, two buses still come at once!
Underground
Although the London Underground isn’t something that most people reading this will have access to, it’s something that slowly but surely is becoming slightly more accessible and so I find myself riding now and again – and still feeling like I don’t belong there! Around 25% of London’s stations are now accessible, but a large proportion of those are on the newer lines that are quite far out the city centre. It can be very difficult to find a route that gets you to where you want to be in central London, and I often find that getting as ‘near as possible’ on the tube and then switching to bus or taxi is the only way to make use of the tube a lot of the time.
Taxis
For many years, taxis were an essential tool for me getting to work in Hammersmith as there wasn’t really any other accessible route from St Pancreas. I was lucky enough that these could be funded through Access to Work, and I would use apps like Gett and MyTaxi (now Free Now) to book a taxi in real time, with very little hassle.
All black cabs in London have to be wheelchair accessible, and the penalties for not taking someone because of their disability can be severe. I’ve not experienced the same level of service outside of London however, with it seeming to be a real lottery if a particular area has accessible taxis – often trying to exhaust every possible cab number to be found on google before conceding there aren’t any, which shockingly is sometimes the case! If you are travelling somewhere new, it can be important to check there are accessible taxis before finalising plans.
Wheel Power
A few months ago, I had the realisation that in my electric wheelchair I was roughly double the speed of most people walking, and so I should take advantage of that when going from A to B, if there weren’t other straightforward routes available. It’s a lovely way to see the surroundings and no doubt means that I get more interesting interactions on the way – as well as not costing any more than a bit of electricity to charge the chair up! I use google maps again to plan my walking (wheeling!) routes – but still have to be mindful that it may try and take me up or down a staircase now and again!
In Summary
I love living and working in London, and although travel can be daunting at times, I wouldn’t change it for anything. My independence is so precious.
On the whole people are kind and extremely helpful, so my greatest advice if you are unsure what to do or where to go is to forget any technology and just ask for help! People are usually all too happy to be of assistance.
When I was fifteen, we moved from Stevenage to Poole in Dorset. The thought of living somewhere new was quite daunting at first but my parents had the ultimate card up their sleeve – Poole had an Arndale shopping centre. My face literally lit up at finding such an accessible shopping arena. They suddenly became the best parents ever, as I LOVE to shop!
Accessible Shopping Arena
At this time, the mid 70’s, indoor centres were still comparatively new, whereas today most larger towns and cities will have at least one. The advantage for those of us with mobility restrictions are obvious, with adjacent car parking, shop mobility, level access, automatic doors, lifts, accessible toilets etc… Many larger stores can also boast wider aisles, accessible changing rooms, wheelchair friendly trolleys, low level pay desks, clearer signs and lighting, platform lifts and BSL interpreters. Our local centre has recently introduced ‘Sensory Sunday’ where every fourth Sunday all shops turn off their music, so those on the autistic spectrum or with other sensory disabilities can shop in a calmer atmosphere. It’s surprising how you don’t really notice the constant stream of music until it’s not there and then suddenly the retail world is a much quieter place.
High Street Shopping
Then there’s the High street, where accessibility often depends on the age of the building. Many shops are able to adapt to low-level thresh holds but with older towns, where buildings have high entrances, they can’t always provide a safe adaption. Some have tried with outside lifts or steep ramps, but in my experience, they are often unreliable and occasionally downright dangerous! Then if I say the word ‘cobbles’, I’m sure you’ve all experience those little gems. They may look picture card perfect and add character to the High street, but they are a nightmare on four wheels and for those with walking difficulties.
Online Shopping
This leads me nicely on to the internet and the pleasure of shopping from home. Where would we be without the internet? Well out shopping I guess. I certainly feel a pang of guilt each time I fill my virtual shopping basket and then moan about the ever-decreasing shops in our town centre. I think it is fair to say the internet is slowly killing off the High street but for many of us being able to access any store and not have to struggle home with loaded bags is a godsend. For example, I do nearly all my Christmas shopping this way. Firstly, you can shop around for the best prices and secondly, you don’t have to fight the crowds. I find crowded places really scary at the best of times but during December people’s inability to ‘see’ me reaches a whole new level. It may well be the ‘season of good will’ but having a bag swung in your face certainly isn’t!
Websites, in general, are very easy to negotiate and stores encourage you to set up an account with promises of extra bonuses in order to gain loyalty. It is a very competitive market, which is great for the consumer. We are no longer restricted to local towns or having to travel miles to get what we want; everything is available and delivered to your door. Deliveries and returns are very flexible with same day, next day, chose the day and even available time slots. Some retailers will also provide the name of the delivery person, presumably for added security and not in case you want to invite them in for lunch! It’s no surprising internet companies are proving so successful and stores don’t really mind if you’re shopping in-store or on-line, as long as you’re spending!
Shops of Interest
Before the internet if you wanted something more specialist it was a matter of asking around or phoning stores up. These days a search engine provides all the answers. Being very small sometimes makes buying a lot more difficult, particularly if you don’t always want to shop in the children’s department of a store. Three companies I particularly like and use on a regular basis are the Little Shoe Shop (thelittleshoeshop.co.uk); Forbidden Heels (forbiddenheels.co.uk) and Little Women (littlewomen.com). The Little Shoe Shop is expensive but has high quality shoes ranging from a small size 10 – 2. Fortunately, they often have good sales promotions – well worth checking out for a bargain! Forbidden Heels are more affordable with prices starting around £45 upwards. Their sizes range from 13 ½ – 3 ½ so slightly bigger. Last but not least is Little Women, they specialise in lingerie and swimwear for small ladies. Their sizes range from AAA – B and their customer service is excellent. Of course, there are many other great sites, it’s just a matter of finding them and then sharing them with the rest of us!
Fortunately, stores are also beginning to recognise we come in all shapes and sizes. It always fills me with joy when I find a size 4 skirt in a shop! Children’s wear is also really good in many stores and less ‘child-like’ than they used to be, although I have on occasions found a great pair of jeans only to discover a sparkly unicorn on the pocket!!
Disability Awareness
Disability awareness in stores also vary. Personally, I don’t like too much involvement with staff. Yes, it’s nice to have someone around if you can’t reach an item but when a member of staff follows you around ‘just in case you need assistance’ I find that a bit intrusive. I guess it’s a fine line between being helpful and being over-helpful.
Diversability Card
Lastly, for those of us at this year’s Conference you will have heard Shani Dhanda’s brilliant talk on the new Diversability card, a discount card for people with disabilities. Please show your interest by signing up to diversabilitycard.co.uk. We can look forward to seeing how this great new concept develops. So whichever way you choose to shop, in store or online –
Remember if you are shopping on line this year by logging onto sites such as Amazon Smile or EasyFundraising you can choose the Brittle Bone Society to receive a percentage of your purchase price at no extra cost to yourself.
Happy Spending!!
What do you like about baking?
I have loved baking since I learned to make a hedgehog cake back in secondary school D&T class. My mum always used to make me really fancy and clever birthday cakes and I guess I have carried on the tradition. I love being able to make things that not just look good but that most people enjoy and comeback for more and I also do baking as a stress reliever. It is incredible that with just a few ingredients you can get something so loved. I am regularly asked to make cakes for people and pre-lockdown I regularly used to bring cakes into the office for everyone to enjoy.
Have you made any adaptations to your kitchen to make it wheelchair friendly?
I do my baking in my regular height kitchen which hasn’t had any adaptations so I have to use my elevating wheelchair in order to reach the countertop and the oven. I have all the usual kitchen gadgets such as stand and hand mixers so that I don’t have to put pressure on my arms when mixing the ingredients and I have the same oven that they use in the Great British Bake Off where the oven door slides away so I can get up-close to the oven without having to lean over the oven door.
Do you have any top tips on specific equipment/ utensils you use?
I would definitely recommend getting a stand mixer or hand mixer to take the pressure off of your arms, there are so many on the market and you don’t have to spent lots as the cheaper ones are often as good as the top end ones. I would also recommend getting a mixer that has a handle on the mixing bowl as it makes it easier to pick the bowl up and pour out the cake mix into cake tins.
Any other top tips you would like to share?
When baking my biggest tip would be FOLLOW THE RECIPE. Baking is not like cooking where you can pick and choose which ingredients you use and the quantities, baking is a science, just a few differences can have big consequences on the end result. However, if your cake doesn’t turn out like you want you can always cut off the burned bits and crumble up the rest of the cake and mix it with some melted chocolate or icing and make cake pops. Baking doesn’t have to be difficult, there are so many recipes and video tutorials out there so just have fun and experiment.
What do you enjoy about cooking?
I love cooking because I love food and fortunately I have a Husband that appreciates home cooking. Particularly in this past year the kitchen has been my salvation. I cannot think of anything more relaxing than chopping meat and vegetables for a lovely casserole or mixing spices for a curry. For me it is about creating something we can both enjoy and knowing what went into it. Martin grows vegetables which is an added bonus.
How have you adapted your kitchen to suit your needs?
We only had one adaption done when we had a new kitchen and that was a low-level surface area for me to prepare food. The rest of the kitchen is average height as that was what I was used to. I use a trusty, solid stool that brings me up to cooker and sink height. We do not have a dish washer as I am one of those rare people that actually enjoy washing-up by hand!
Any tips on equipment?
We both love a cottage pie but when I have had sore shoulders mashing potatoes can be a bit of a trial. I then came across the Masha electric masher from Lakeland.co.uk which not only gives lovely smooth mash but is easy to use and clean.
Our hob is not anywhere near the sink, so I drain food into a Tupperware bowl next to the oven, and then empty the water when cold.
To turn the taps on from my wheelchair I found scissor tongs work great for extending my reach. It is all trial and error really to find what work for you. Sometimes the simple things are the best.
Any other tips?
One thing I would advise is it is always better if you can physically see and feel the product before you buy. Particularly cooking equipment which may say ‘very light to use’ in reviews online, only to find they are much heavier than you are led to believe. I always go ‘lighter’ with pans and cookware because once filled it all becomes much heavier to lift.
Batch cooking is great for days when you have more energy and saves you time and energy later on.
If you have both high and low storage cupboards store lighter products up high as these can be reached using a trusty grabber!
