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

The Journey Continues......

It has been quite some time since I last wrote a post, four months. I've even found a draft post that I wrote in December, only there is no content, just the title! This gives a good indication of how busy it has been in the last quarter of the Looking Out For Sight (LO4S) project at work and in our family life too. I'm trying to make better use of time though for all the extra activities I love.

The first year of the LO4S ended on Friday and I'm very happy to say that Wiltshire Sight have secured funding for a second year so we will be able to continue the beneficial training that has been developed and implemented and my contract continues for another year. I'm really looking forward an exciting project year ahead, already I've attended a training day at the Great Western Hospital where I displayed the LO4S toolkit and talked to staff about sight loss and how they can further support patients. I am sure we will have more opportunities similar to this throughout the year. We will be delivering the training on a national level with other sight societies so it will be a very interesting year.

I attended an RNIB/Action for Blind People 'Living With Sight Loss' course this week. It was a one day course, so not as in depth as the Wiltshire Sight 'Moving On' course that I attended about 3-4 years ago which lasted six weeks. However, what was beneficial was learning about what is new in the eye world such as the free Talking Book service from the RNIB which enables the user to download books onto their tablet or phone - perfect for me. Also, I obtained details of the music department at the RNIB, I am so keen to get back into playing the classical guitar (I achieved Grade 3 seven years ago) but it is really challenging since my sight has worsened over the last year. I cannot read more than one note at a time, or read any of the dynamics such as when to play loudly, quietly etc. This means I will need to learn pieces by heart which is rather a daunting prospect and has put me off starting again. However, I am going to phone the RNIB music department and ask for their advice, I have a beautiful sounding guitar and I want to be playing it again and at the level I reached previously. Today I started from the beginning of my guitar books to refresh my memory of the notes, it came back pretty quickly so I'm confident that with some guidance from the RNIB and regular practice (that will be the biggest challenge), I will play again.

At the 'Living With Sight Loss' course it was good to meet others in a similar situation to myself, we were all able to empathise about the challenges we have and the emotions that you go through with sight loss. So often you feel like you are the only one in the world with sight loss but it's not the case - there are over two million people who have a sight impairment!

Adventures at Center Parcs and Wheelchairs

We spent the Guy Fawkes weekend at Center Parcs, Matthew and I had visited it years ago but we had never taken the children.

We had a brilliant time and as a wheelchair user I found it mostly accessible. They had extra aids such as a wheelchair for use in the pool area that we used to take me down a ramp right into the swimming pool - this made it so much easier that negotiating the steps in the shallow end. They also had aids for people who are visually impaired such as the large, tactile maps in the main areas. These were created with the RNIB and make it map reading more accessible. All staff were very supportive and were able to offer assistance when requested. We had a wonderful time and would highly recommend it for families and if you have an impairment.

I'm exploring my options for a new manual wheelchair, mine is about twenty years old and whilst it still looks modern, it is rather heavy for people lifting it into their cars. I had an assessment at the wheelchair service in Trowbridge and tried a couple of manual wheelchairs. The Quickie Neon 2 was a lot lighter and it folded up which is one of my requirements. I need to enquire about prices from different wheelchair suppliers and then the wheelchair service will provide a voucher towards the cost of a new one (they could supply me with a basic wheelchair but it was no lighter than my current one.)

I'm also trying to sort out applying for a lightweight, foldable wheelchair for work, one that can be transported easily in the taxi. This will make it less tiring, give me greater independence especially when I'm delivering training. I'll also be able to use my cane which means I'll bump into less things and be more confident when moving around. It's a long process - I'm applying through Access to Work but it will be worth in the long run.

Visionary 2016 and AET course completion....

Visionary 2016 was a really enjoyable couple of days which felt like a big personal achievement as well as a professional one. I did have some nerves leading up to it, especially because it was an unfamiliar venue and there would be lots of people there. It went very smoothly, with the valuable support of my personal assistant and Wiltshire Sight colleagues. The staff at Aston Conference Centre, Birmingham were also very helpful. I attended various workshops including a very interesting one on employability for visually impaired people and also information on a project looking at Access to Work and people's experiences of it. It was interesting talking to various people related to eye health and to talk to professional people who are also living with visual impairment.

Wiltshire Sight were presented with an award for 'Best partnership in practice' for our one stop event and the way we work well with other organisations. It was a great recognition of our work to support visually impaired people.

Following Visionary 2016, I completed my Level 3 Award in Education and Training which involved delivering a micro teach session on visual impairment. The micro teach went well with plenty of positive feedback, despite the mishap of using the timer to count down instead of counting up - it beeped eight minutes into the training! I enjoyed the course, it complimented my work, added to my skills and it is an accomplishment to be qualified as a trainer.