Hearing the magic.....

As part of my husband's birthday celebrations, we went to the cinema to see 'Fantastic Beasts: The Crimes of Grindelwald'. As well as looking forward to seeing the next chapter in the Fantastic Beasts adventures, I was excited to watch a film while using an audio description headset for the first time. My sight impairment means that I miss a great deal of content during films, especially action scenes, because my tunnel vision restricts the amount I can see and my eyes cannot take in information quickly. I find it virtually impossible to follow a scene if it is moving quickly.

I have inadvertently listened to audio description during one of the David Attenborough wildlife documentaries and I found it incredibly helpful, especially when the animals were camouflaged against trees! I did also use it another time during an episode of a drama. At that point in time, I found that it interrupted the suspense of the scenes and was too intrusive for me. Since my sight last worsened, I now find it harder to follow films and I'm welcoming any help I can get to understand the story and make it more accessible. 

A photo of the audio description headphones and receiver unit. (I'm sorry for the very poor contrast between them and the background, next time I'll remember to consider that!)

During 'Crimes of Grindelwald' I had an over-ear headphone set to wear that was connected to a small rectangular receiver box that fitted in the palm of my hand. It was set up to receive the audio description once the film started. In the opening scenes I was incredibly grateful for this feedback because there were a lot of action scenes and I just couldn't keep up with it and would have missed out on valuable details. Throughout the whole film it was very useful to have the names of the characters spoken to me - I find it really difficult to recognise individual people on screen and often muddle them up which gets rather confusing. 

Whilst it did aid my understanding of the film, there were some drawbacks to using audio description. The main one was that at times when the sound of the film was very loud (usually the action scenes) it completely drowned out my audio description. I had to keep adjusting the volume throughout the whole film and at times I just had to accept that I couldn't hear the descriptions because the film was too loud. It would be good if the volume of the audio description automatically adjusted with the film's volume but I don't know if this is technologically possible. Also, I found that by listening to someone talking in the quiet moments did take away some of the magic and escapism of watching a film. It was a real conflict in my head of wanting someone to tell me what was happening but also wanting to completely submerge myself in the story. It was hard to escape from reality when listening to descriptions. 

It is worth noting that the staff at Empire cinema in Swindon were incredibly helpful, especially as I didn't book the headset in advance. I did check when I booked the tickets online to see if the screening was audio described. I asked the staff why only certain films shown at particular times are audio described, it is natural to believe that all films should have audio description. They were very informative and explained that not all the cinema screens have the infra red technology to allow audio description. It may be available for all films for more modern cinemas.

I would definitely recommend trying audio description if you haven't done so. Do let me know what your experiences are and if you have any tips for getting used to the description during quiet scenes. Also, do you have access to audio description at any film you wish to see?

On balance I think audio description is worth it for me but it is a compromise, as it often is when you have a disability. As much as you wish to wave a magic wand to fix the problem you are experiencing, sometimes you have to accept that the solution isn't always as perfect as you would like (and I'm a perfectionist!) but it can go some way to making your life that little bit more accessible. 

I look forward to reading your comments about this and hearing your audio description tips.

~ Best wishes, Melissa ~

Purple Tuesday - accessible shopping shouldn't just be one day a year but every day....

Today is 'Purple Tuesday', an awareness day when retailers in the UK are being encouraged to think about how to make shopping more accessible for people with disabilities. In total, people with disabilities make up 15% of the world's population which is more than 1 billion people. Whilst being in the largest growing minority group, life costs £550 more per month if you have a disability. However, people with disabilities also have spending power worth £249 billion per year to the British economy. This spending power is known as the 'purple pound' and highlights one of the reasons why it is so important to retailers that they work on making sure they provide an accessible service and meet all consumers' needs. 

Shopping is a challenging experience for me, as a wheelchair user, having severe sight loss and, to a lesser extent, wear hearing aids. All these impairments means there are different obstacles that make shopping less enjoyable and harder to carry out.

Firstly I need to be able to get into the shop itself and in rural Wiltshire, a lot have steps leading up to them and no ramp. I need enough space to move my electric wheelchair around and larger shops such as Boots, M&S, Waitrose are usually good. It is incredibly difficult when there are displays of items in the way or too narrow aisles and that is when I become anxious about knocking things over and causing damage. This is especially problematic at Christmas and I dread shopping then. As well as needing to navigate around the store freely, reaching items can be a challenge, although I’m lucky to have a wheelchair that rises up. The hardest task is usually when I pay because the card payment machine is often situated in an awkward position and isn’t always removable from its stand. I can’t usually see the number pad and hope for the best that I’ve pressed the correct buttons. I remember being in The Entertainer, paying for a toy for my children, when I couldn’t access the machine because they had cable tied it to the stand! I had to tell my young son my pin number and ask him to enter it. It was a poor experience, what would have happened if I was on my own?!

I use a long cane when I’m in my electric wheelchair because I have very narrow vision. When shops change their layout or have more stock at festive times, it is really disorientating and confusing. I can get claustrophobic and overwhelmed trying to find what I’m looking for and when comparing prices. If the layout is logical, and clearly displayed, then it is easier but it still takes me a long time, and combined with my mobility challenges, shopping is hard work and rather tiring. My hearing doesn’t affect my experience that much, but if it’s too noisy when I need to talk to someone, it can be hard to understand what they are saying. Also, although my hearing aids are brilliant at making it easier to hear what people are saying, it amplifies all sound so in a busy, noisy environment, it can be overwhelming, especially when combined with the disorientation of my sight impairment and the difficulties I have maneuvering around.

Despite the challenges, most staff in the shops are very helpful. I do think this helps overcome the obstacles if someone is there to offer support. I’m also confident to ask other shoppers too, and so far most people have been happy to help. This may depend on your location, I usually shop in my local small town where most people know me and it has a good community feel. Experiences may be different in larger cities where it is busier.

It takes a long time though for changes to take place, even when they are pointed out. I carried out an accessibility assessment for Waitrose three years ago (I’m a disability consultant). Mostly the store is accessible but there are some issues that needed addressing that I highlighted. One was that the cutlery area is completely inaccessible to someone in a wheelchair because they can’t reach them. Even when I detailed this in my report, nothing has ever been done about it which is really frustrating. They did make some changes to other areas but there are a few issues that still haven’t been addressed.

I do most of my shopping online because it is so much easier and more accessible. Unfortunately this doesn’t help our declining high street. I think initiatives like Purple Tuesday can help to raise awareness of the challenges faced by people with a disability but I wouldn’t want it to become a special day that is more accessible than any other. Shops should be as accessible as possible every day. I think what is really needed is awareness training (which I offer) about the impact that disability has on people’s lives and how the shops and their staff can support them in the best way. Often changes are simple and not expensive but can make all the difference to someone’s shopping experience.

Do comment and let me know what your experiences are when shopping with a disability and also what your thoughts are about Purple Tuesday. I'm genuinely interested to hear them.

~ Best wishes, Melissa ~

Model for a morning!

I had an exciting morning a couple of weeks ago being a model for Nationwide Building Society for their new marketing material. Initially I received an email inviting me to complete a survey if I was interested in the opportunity. When I filled it in I wasn’t expecting to hear from them for a while so I was really surprised to receive a call from Gemma a few days later with the photo shoot arranged for the following week! 

A photo showing Melissa sitting in her wheelchair in the kitchen,
with the photographer taking a photo and the art director assisting.

I specifically asked to be photographed in my wheelchair because there is so little representation of disability in the media, although it is slowly improving. They were very willing do this as long as I was happy.  The photos needed to show members of the Nationwide community carrying out activities that would need items that they would have purchased using their debit or credit card. Two of my hobbies are baking and playing the guitar so it was decided to use these scenarios. 

A photo showing Melissa sitting in her wheelchair in the
 kitchen,with the photographer taking a photo and the art
director assisting.

Christopher, the photographer, and Andrew, who assisted him, set the lighting up while I completed the forms with Gemma (brand executive) and Louise (art director). They were so helpful and read out the information to me because the writing was rather small. I then got into position in the kitchen and we worked out what kitchen equipment to use. When I put my apron on, I wanted to reverse it because the front looked a bit dirty but they said it looked more authentic! At first we mixed a flour and water mixture to go in my food mixer but it didn’t look very realistic so I suggested I beat some butter and sugar (I remembered the quantities I needed for a biscuit recipe). This looked so much better and different photos were taken with slight adjustments throughout. We then introduced an egg and the biscuits began to take shape!

You do have to concentrate and I did find at one point my mind wandered and I didn't realise that Christopher was directing me to smile at the camera. It's not as easy as you would think being photographed for a few hours, I did really enjoy it but wouldn't want to do it every day!

It was interesting to hear about what needs to be considered for putting the leaflets together. At one point Christopher took a photo of the ceiling so that the art department could piece this together with the photo of me so that the ceiling continued into the text seamlessly. 

After finishing the photos in the kitchen, which took about an hour, we moved into the living room for the photos of me playing the guitar. 

A photo showing Melissa sitting in her wheelchair with the
guitar on her lap. The photographer is taking a picture and
the art director and photographer's assistant are supporting.

I played a grade 1 exam piece 'Oriental Express' that I’m relearning. It’s harder now because I haven’t really played the guitar since I lost a lot of sight and I’m finding it very hard to follow the music. My eyes can’t keep up with the speed I play and I also cannot see more than one note especially if two notes need to be played at the same time. When I’m reading the notes I also can’t see the dynamics. As you can probably imagine, this makes learning the music a very lengthy and frustrating task. I love playing though so I’m determined to work at it and get up to my previous level (grade 3). I haven’t played to anyone other than Matthew or our children in over nine years but I didn’t have any nerves at all, everyone made me feel so at ease. Once they captured the photos they needed we were finished!

I really enjoyed the experience, and I’m looking forward to seeing the final images in the leaflets. All participants who were selected were given a £100 voucher and I’m going to use it to buy some roses and lavender for our front garden - it will be a lovely reminder of the morning. I do hope these photos help in some small way to offer greater representation of people who have an impairment. 

Please note that the photos I’ve shared in this blog post are not the official photos, Gemma kindly took them on her phone. They give a great ‘behind the scenes’ insight into what happens at a photo shoot. 

If you've had any experiences like this where you've had the opportunity to raise greater awareness of something, I'd love to hear your thoughts in the comments. I hope you've enjoyed my insight to being a model for the morning. 

~ Best wishes, Melissa ~

A photo showing the chocolate chunk biscuits I partly made during the photo
shoot and completed afterwards They were yummy!

Confidence - something that grows with time

I had an exciting opportunity last week to talk about building confidence at Wiltshire Sight's centenary event on 12th September 2018 at the Corn Exchange, Devizes. I was invited as one of the three speakers, all discussing topics related to sight loss.

I developed the talk with the aim of getting participants to think about what confidence is and how they can boost their own confidence. This could be linked to the impact of an impairment such as sight loss or mobility. The questions I posed  could also be related to an aspect of life that someone may find challenging such as attending social events or experiencing a lack of confidence when you lose your job. It was an enthusiastic session, with all participants sharing their thoughts about confidence.

The participants worked in small groups a couple of times during the session and these are the answers they gave to my questions:

Confidence is.....

• Ability to integrate with life, particularly others.
• Know what you want to do and overcoming the 'I can't do'.
• Comfort in your environment, giving it a go.
• Feeling good about yourself.
• Giving yourself permission to be yourself.
• Ability to talk positively about challenges such as sight loss.

How to develop confidence.....

• Recognition of problems e.g. using a badge to indicate sight loss when out.
• Make an effort, explain to others.
• Improving skills and knowledge.
• Not being afraid to have a go.
• Realising others are also lacking in confidence. 

After participants shared their thoughts about confidence, I shared my experiences about how my confidence has been affected by my sight and hearing loss and also my mobility impairment. All of my impairments have caused me to feel a bit different to my peers. This has been tough to deal with when also adjusting to the impact of these impairments when they worsen. However, as I get older it becomes easier to adapt to them and use all the knowledge and resources I've gained over the years to get back to a positive outlook. During the talk I spoke about how I have been able to overcome these challenges and gain confidence, the main contributors to this were my long cane, my Dogs for the Disabled (now Dogs For Good) assistance dog, Rowan,  who was probably the biggest influence over ten years ago and all the support received from family, friends and lots of people in the eye health world. 

One important thought that came out of the session is that everyone experiences lack of confidence to some extent at some time, even though they may appear to be very confident. 

Photo shows the flip chart notes of the feedback from the group work. The details of these notes are included in the blog text above this photo. There are also representations of items that have helped my confidence journey including: my long cane, bumpons, my Apple wireless keyboard with a large print silicone overlay, a magazine article about my partnership with my assistance dog by Dogs for the Disabled (now called Dogs For Good) and a copy of the special edition Royal Mail stamps that my assistance dog, Rowan appeared on. 

The feedback from the session was very positive with people saying that they had really enjoyed it and that I had inspired them and given them a confidence boost. I really enjoyed delivering a talk again - it always gives me a buzz to do this work. It also makes me feel happy to be using my experiences in a very positive way. 

I was able to chat to other professionals at the event and also learn about new assistive aids that are available. In particular, the selection of wearable magnification and smart glasses is widening. I tried Orcam - text to speech glasses - a while ago and I was amazed at what they can do. Last week I tried Oxsight Prism which are some glasses that seem to condense what you are seeing so that if you have loss of peripheral vision, these glasses will assist you in seeing more. I have tunnel vision so it was very interesting to try them out. They did enable me to see more, and changing the colours can be useful. However, I would be a bit self-conscious wearing them out and about but that is personal preference. All the smart glasses are rather expensive but this is to be expected with new technology. I'm sure that as they grow in popularity and are not so new to the market they will reduce in price. 

Other interesting advancements are that the handheld optical magnifiers can now be charged with a wireless charging base, similar to mobile phones, instead of using batteries. This makes them a little lighter and means you don't have to fiddle around with trying to get the batteries in the correct way. They are obviously more expensive than the battery ones for the initial purchase but then you will save money by no longer needing to buy batteries for them. 

Overall, it was a very interesting and enjoyable day and I'm grateful for Leanne Hubbard's and Maggie Hemmings' invitation to be a speaker all those months ago. If you are interested in me delivering a similar talk, or wish to discuss any other accessibility services I offer, please do contact me via email: melissa@sansumandco.co.uk.

"It's a long cane - not a magical electric wheelchair controller!"

I've had the draft of this blog post floating around in my head for a while but it's been so busy with the end of the school term and the start of the holidays that I haven't had the time (or energy) to put my thoughts down. However, yesterday's talk on BBC Radio 5 Live has spurred me on and here it is!

Yesterday I was invited to talk on the BBC Radio 5 Live's Afternoon Edition presented by Nihal Arthanayake to discuss attitudes and challenges towards parenting with a disability. (You can hear my contribution 52min 39secs into the programme: https://www.bbc.co.uk/programmes/b0bcghfc)

The radio happened to be on when I returned from shopping with our children and I heard some of the discussion. I thought it was wonderful to hear disability being discussed on national radio so I tweeted BBC 5 Live to say how amazing I thought it was. Straight away they messaged back asking if I'd be happy going on air to chat about my experiences as a parent with disabilities! It all happened so quickly  (within ten minutes) that I didn't have time to think about it or get nervous. I talked about the challenge of being unable to drive when you are a parent with sight loss and that this restricts what I'm able to do, especially during the school holidays. Six weeks in the summer is a long time when it's hard getting out independently. I was asked if anyone has asked any strange or unusual questions and I replied that I was once asked if my long cane controlled my electric wheelchair! I think it is often difficult for people to imagine having several disabilities and also, sight loss is often invisible and when you have lived with it for some time it is relatively easy to hide the challenges it causes.

Photo shows Melissa in
her electric wheelchair with
her long cane.

Being on BBC 5 Live was an unexpected experience but I really enjoyed giving my input and helping to raise awareness to a large audience. It still feels a bit surreal!

As someone with sight loss, I rely on my long cane when I'm out and about in my electric wheelchair. I am never without it - if I don't have it I feel lost and it feels like I'm constantly going to bump into something or drive myself down a hole. The cane tip gets a lot of wear and tear, probably because I often travel quite fast around our village over bumpy country lanes! Previously I've used the jumbo roller ball top that the RNIB sell for my Ambutech cane, priced around £6. https://shop.rnib.org.uk/mobility/canes/cane-tips-and-accessories.html
I use a jumbo roller tip because it is smoother going over uneven ground and less likely to get stuck. I do not use the 'tapping' technique because it makes my arms ache too much, my cane stays in constant contact with the ground. A year and a half ago I saw that they had introduced a new 'high mileage' roller ball tip that I thought would be perfect for my heavy usage. It is significantly more expensive costing £13.95 which is a lot of money for one cane tip. I decided to test it to see how long it lasted and whether it was worth the extra cost.

Photo shows Melissa's 'high
mileage' cane tip nearly worn out.

The old cane tip typically lasted five months and the bottom of the tip always wore out and broke quickly. With the new 'high mileage' cane tip, it lasted fifteen months and wore away far more gradually. Although the bottom of the tip did start breaking off, it gave me much more time to get a replacement whereas the old tip was a sudden decline. The cost and length of time that the cane tip lasted meant that the newer 'high mileage' tip definitely lives up to it's name and is worth the extra cost.  It would be interesting to know how long cane tips last if you use them, especially if you are not using an electric wheelchair. Please do comment or message me through social media.

Finally, if you're still wondering, there is nothing magical about my cane, it does not control my wheelchair in any way. It simply acts as a guide to help me navigate and manage the challenges of my sight loss!

Long Cane Tip Review Summary

• Old style jumbe roller ball tip - £6 approx - Last 5 months - Cheaper but breaks quickly.
• New 'high mileage' jumbo roller ball tip - £13.95 - Lasts 15 months - Initially expensive but lasts longer and more gradual decline before breaking.

Photo shows Melissa's long cane.

Invisible Impairments

Following on from my previous post about mental health, today I want to consider other impairments that are often not visible but can still have a massive impact on people's lives. If you've read my other blog entries, you will be very aware of my sight loss. I do often think of this as an invisible disability because so many people who see me do not realise that I've lost a lot of sight. This makes it difficult out and about because there can be misunderstandings and I'm very aware about making sure I do the right thing in case others form opinions of me based on my actions due to my vision. I shouldn't think like that but I do, I don't want to appear to be ignoring someone or to bump into something because I haven't seen it. I do use a long cane when I'm in my electric wheelchair but a lot of people don't connect this to sight loss, they believe it is connected to my wheelchair in some way. I think it is difficult for some people to imagine someone with more than one impairments still getting out and doing regular daily tasks. 

A year ago, I was diagnosed with mild hearing loss. Usually the NHS wouldn't provide hearing aids for that level but combined with my sight impairment, I was having a lot of difficulties and was feeling rather overwhelmed and isolated in the settings where hearing was a challenge. In social settings it was hard to hear what others were saying, this would be embarrassing and I'd often just keep quiet about it and hope I responded in the right way to conversations! It was very difficult though especially as my eyes cause so much of a challenge and in a social setting the light is often poor for me. It made me feel very cut off from the situation and unable to participate like everyone else. I was finding it hard to hear what my children and husband were saying to me which was becoming increasingly frustrating for everyone. I could tell they were talking to me but despite my best efforts, there were many times on a daily basis that I just couldn't hear the sounds properly and turn them into words. It did depend on the situation, whether they were facing me etc but it was becoming much harder and it was tiring, especially on top of all the challenges I have with seeing. It was also very difficult to hear what people were saying on the phone and this was particularly difficult at work. 

I find it doubly isolating to have sight and hearing loss - neither of which is visible and all their challenges are really only known to those who are experiencing them. If you have a more visible disability such as needing to use a wheelchair, it is easier for someone to imagine the challenges you may have, such as not being able to get up steps, unable to travel over uneven surfaces etc. 

Since receiving my hearing aids a year ago, it has made so much difference and in ways I didn't imagine, especially because my hearing loss was diagnosed as being mild. I was told that the hearing aids may not benefit me so I am amazed by the results. Firstly, I can now hear what my children and husband are saying most of the time (except when they really mumble or walk away while they are talking!) I can hear when a car is coming up behind me - I didn't realise I was missing out on this auditory cue but for me this is so important because of my tunnel vision. It has made it safer for me being around cars. I can hear the different sounds my long cane makes on surfaces which gives me additional feedback about the environment. My hearing is improved in social settings but because the hearing aids amplify all sounds, sometimes it can just all be a bit of a sensory overload. I do use the different settings on the hearing aids which includes one that helps to cut down background noise and just focus on conversations around me. Unfortunately though in a busy restaurant/pub, it can just be a bit much for me and makes the experience less enjoyable. Imagine having lots of noise going on but finding it hard to distinguish conversations and other sounds whilst only being able to see a small tunnel in front of you and being in an unfamiliar setting and not knowing where things are. It does make it all feel rather unnerving and a bit claustrophobic, especially if the setting is small/crowded too. Thankfully these situations don't occur that often and I am able to deal with them, I'm just glad I don't have to every day! 

My hearing aids are discreet, they do rub a bit with my reading glasses but largely they are comfy to wear and many people wouldn't even know I have them, except perhaps when I have my hair tied up. I'm not self conscious about them, probably due to my age and the outlook I now have, I would much rather use an aid that makes every day life easier rather think of what others thought of the aid. I would not have felt this way 20+ years ago!

I do find it very interesting to think of the different challenges I have with each of my impairments and what I'm having to do to work around them. In one sense it's rather scary - it can make me feel like I'm in my own little bubble when I'm out of my comfort zone, but many people have different challenges and impairments that are invisible to others. I think it's a case of being aware of what impact these challenges can have and then being able to offer support and understanding. This is why I feel so passionately about being able to share my experiences and deliver my work as a disability consultant. People are only aware of how it is for someone else if they are informed about it or experience it themselves.  

Mental Health Awareness Week 2018

One of the main topics on social media last week was Mental Health Awareness week (14th-20th May 2018). The focus this year was on stress; research has shown that two thirds of the population will experience a mental health problem in their lifetime and stress is a key factor in this. People may be affected by stress and experience symptoms such as anxiety and depression for many reasons. The impact of having any impairment e.g. sight loss, hearing loss, mobility impairment, dyslexia and many more, can result in stress. This can occur at any time, whether the person's condition has worsened suddenly, they've had an updated diagnosis or they are finding it hard to adapt to the challenges that the impairment causes on their daily life.

I am a very positive person and I'm someone who keeps persevering, always keen to progress in my personal and professional life. However, when I've had to adapt to changes in my disability, whether it is the sudden worsening of my eyesight or another deterioration such as when I was finding it harder to breathe at night and switched from CPAP (continuous positive airway pressure) to BIPAP (bilevel positive airway pressure), it did dampen my spirits and give extra challenges. Whilst these feelings of worry and anxiety didn't last long, it is important to be aware that people who have an impairment may have invisible emotional challenges going on as well as physical challenges. For some impairments that are invisible such as dyslexia, hearing and sight loss, it can be even harder for unaffected people to realise the daily challenges that are experienced in both a physical and emotional sense.

As research has shown, it important to have overall awareness that stress can affect anyone and to be aware to look out for one another. More information about mental health can be found at the Mental Health Foundation website www.mentalhealth.org.uk

As an update, since my last post a great deal has changed. At the end of March I completed my role as Project Co-ordinator on Wiltshire Sight's Looking Out For Sight (LO4S) project. The end of Year 2 gave us amazing results and it's been a real pleasure to work on LO4S over the last couple of years. I can't thank Leanne Hubbard, Maggie Hemmings and everyone at Wiltshire Sight enough for all their support, both as an employee but also through my sight loss journey. We've had lots of fun and a few challenges (Access To Work and my own stubbornness at being independent and not seeking support!)  I have had many wonderful opportunities such as receiving the Award in Education and Training qualification and delivering training around the country. I am very grateful to Peter Corbett (CEO of Thomas Pocklington Trust (TPT)), everyone at Thomas Pocklington Trust and all the societies and organisations who have given me so much positive feedback and support through delivering the project. I really appreciate it.
I'm now focusing on my role as a Disability Consultant, it has been something I wanted to develop for a long time and I'm eager to work with other organisations and deliver training, accessibility audits and talks that enhance awareness of disability and lead to tangible changes to people's experiences. I have a wealth of experience that I would like to share with others to make a difference to the lives of people who have a disability/impairment. (I'm still working out what the preferred terminology is!) I'm also going write more regular blog posts that I hope are informative and interesting. Do contact me at melissa@sansumandco.co.uk if you would like know more about my consultancy services.

Best wishes,
Melissa