My comfort zone has always been my work and my family. I was always content with my life. I had never experienced that dread of going to work, as I enjoyed every aspect of my job, but I always felt like there was a little something more missing. Starting university has required me to push myself out of that comfort zone and discover all the things that were missing. It has given me a platform to be a part of creating a change in society that I am sure we all desire. To be more inclusive of everyone.
In the 6 months since starting University, and beginning my Learning Disability Nursing and Social Worker Journey, I have:
Become active upon social media – particularly Twitter.
Started a blog.
Completed my first placement(s).
Campaigned for the NHS Long Term Plan.
Created draft GP access cards for the homeless community.
Started the 150 Student Leadership Programme.
Created a survey for LD professionals about recruitment, with 160 hits.
Become a part of the We Community, joining @westudentnurses.
Started the designs for recruitment advertising, with the #IAmA campaign.
Begun putting together plans for a podcast for professionals – made by people with a learning disability.
Been given the opportunity to apply to be a departmental representative at University.
And most importantly, begun preparations to take part in the Great North Run with Abi, using her wheelchair.
This isn’t an opportunity to brag but to highlight that the opportunities are endless; when you decide to let them in. Last year, I barely imagined starting university, never mind reaching the point that I have!
“You can be his caregiver, or you can be his lover; you
can’t be both.”
“100 out of 100 times this won’t work.”
These two statements came from a recent episode of Dr Phil
talking to a young couple, with issues in the relationship arising, apparently,
because of the boyfriend having a disability. Dr Phil puts this down to the
fact that the girlfriend was attempting to play two roles in the relationship,
and states that no relationship will ever
work if you are both; this is not a statement that I agree with.
Now I don’t watch Dr Phil and only came across the episode
because of the backlash it has currently been facing due to the very narrow, one-sided, argument that it has put across on
TV showing people in relationships where caregiving is an aspect of that
relationship. From the #100outof100 hashtag on social media platforms, it is
quite evident that these kinds of
relationships can not only flourish continuously but can also be long-lasting.
The view Dr Phil has given is not from a personal perspective and is one grounded without any factual merit. It was quite evident that the couple had underlying problems that had very little to do with the caregiving or disability. For any relationship, there can be moments where that connection fades away, or it becomes toxic, due to a lack of communication of each other’s needs. Relationships are very complex, and although being a caregiver may add some more complexities into that dynamic, it does not change those underlying values that create and maintain any relationship. The focus on the disability throughout the episode just moved the focus away from the real issues and the much-needed support they needed in sorting these problems out. The premise of the show wanted to focus on how detrimental it is to date a person with a disability, and why would anyone choose to make that choice! People make that choice because they fall in love with the individual; acknowledging, accepting and understanding the disability, but also being able to see beyond it.
If caregiving causes
relationships to fail then why do couples survive: pregnancy, old age, death,
cancer, depression, stress from work, money/life worries. All issues
that may be faced in any relationship
where support can be 2-sided. We all need care and support throughout our lives,
whether that is daily, or weekly, monthly
or perhaps just on the odd day. Being a caregiver for someone with a disability
does not stop you from loving them, and nor does it change the level of the
support they provide you. It may not be
presented the same in every relationship, but it does exist.
Dr Phil should have focused on the aspects that cause any
relationship to fail, lack of trust, honesty, communication and at the heart of
it, love. People do fall out of love, and
it may be utterly unrelated to any of
these aspects, or it could be a combination of them all. And sometimes, it may
be because of the disability. To claim it occurs in all relationships shows a
complete disregard to the many couples that flourish and continue to fight this
negative stereotype of dating a disabled person/person with a disability.
This is just a quick
thought on a subject that annoyed me this week. If we fail to challenge these views, people lose the opportunity to be in beautiful
partnerships due to the fear of these “facts” being a reality.
I am not trying to be a poet but instead hoping to highlight people are more than what we think and what we see. We often ignore that there is more to someone than those initial reactions or preconceptions we have already been educated to make; which is unfortunately just another reinforcement of societal views. I feel it is important when I write any of these posts that I may be talking about people with learning disabilities, but I know that it applies to so many people in society.
These preconceived ideas have a massive impact on people with learning disabilities as they often have an unheard, or ignored voice and there is a range of barriers that allow them to challenge these stereotypes. Society tends to pigeon hole people into groups; which there are many. And the majority of the time, it is not with any ill intention but just a way of identifying differences, and our place in society. There are positives in that it allows us to identify the significant issues affecting large groups of society and led to the creation of protected characteristics of individuals. Law and policy have been created to ensure that groups facing inequalities are protected to ensure they have the same rights as anyone, with adaptations being made to ensure this happens.
The danger arises when we take this blanket approach, without realising that any group of people is made up of individuals. Individuals who are unique and unlike any other. We are all unique; we wouldn’t assume that a stranger shares the same values, beliefs, thoughts and feelings and life experiences as ourselves. So why do we continually impose a set statement or identifier on a group? It is essential that we all know what a learning disability is, but we can not impose a fixed definition of a learning disability to every individual with a learning disability. If we did, we would be failing to support them. It is why person-centred practice is so vital to the future of health and social care. It gives individuals the power to make people aware of who they are, and what impacts them. There is so much more to people than the labels we give.
All of this brings me to my next point about the power of language. It is a topic that I talk about a lot with my partner, who sees herself as having a disability, and not a disabled person. The term disabled person is one recommended by the Gov UK Office for Disability Issues (2018); I will leave a link at the end of this post. The language used here is seen as a form of an identity-first language, which places the identifying term before the person, and for some it allows them to identify what they see as an integral part of their identity. In contrast, person-first language places the person before the identifying condition, and people see it as recognising them as more than a condition. Different areas of society and various groups will choose to use either language structure to identify themselves. But again, it is a blanket approach and forgets the individuality of the person, and what matters most is how they want to be recognised. It is why we need to move towards using person-centred language and instead of creating new linguistic rules we talk to the individual and see precisely what their preference is.
The use of language is something that interests me. I think we rely on a rigid structure far too much and have a refusal to allow flexibility in exactly how it is used. The way people communicate comes in many different forms, thanks to the flexible language identified as right for the individual; there is even a language of touch. Language should be seen as having a fluidity that adapts itself suitable for an individual’s needs and choice.
Thank you for taking the time to read. I apologise for my use of language in all of my blogs. They are not intended as an academic piece of writing and instead, are often just a collection of thoughts jotted down when time allows.
I am writing this on the way back from the student leadership event; organised by the Council of Deans of Health, with support from the Burdett Trust. What can I say, other than wow? The enthusiasm, passion and kindness shown in the room gives me great hope that the future of healthcare is looking very bright, despite all the turmoil and issues it currently faces.
It all started and ended with these tickets.
I have written in the past about how when different professionals come together there can be muddied water, despite the common ground that we all share at the core. I didn’t observe a single point when this happened, nobody assumed superiority over another and instead wanted to engage and learn from and about each other. After the first day I tweeted this:
I stand by this statement. The group of people I met showed that we can all work together to make a real positive impact on people’s lives and healthcare. I do not doubt that they are all going to make great strides in their professional progression, and development.
Let me rewind to just before the event. The journey to the event wasn’t without its issues; it felt like there was a running list of things trying to stop me reaching the day. It began with the bus being late, the ticket machine just holding up its imaginary hands and refusing to print, the fact I had no idea how to use the tube so watched multiple pass before I realised I was free to board any. On arrival into Reading I left the train station and for some reason walked in the opposite direction. But I did arrive at the event, and I was also a little early. I collected my badge and sat down to catch my breath.
Now there is something I don’t talk about a great deal, but I do have problems with anxiety, especially in new or social events. It can sometimes be overwhelming, and it takes a lot just to push myself past that initial block. It can occur days before I know something is happening, where my brain goes on overload, and it plays every worst-case scenario it can think off, incessantly. It is forever tempting for me just to go “No, I don’t want to do it now”. It was no different for this event, but I have learnt to accept those thoughts and most importantly talk about them. Verbalising the feelings, with people I trust, has helped a tremendous amount in helping me to overcome them. Despite me pushing through that initial block I can still have those mental processes running alongside everything else, and it can lead to me sweating buckets when anxiety kicks in; I can sweat in sub-zero temperatures, my mouth goes dry, my limbs feel like jelly, and that sinking feeling in my stomach becomes more pronounced. Anyone who has sat beside me has probably heard my body verbalise its stress before, as every part of my digestive tract seems determined to scream out; this can only add to the anxiety.
Despite all of this, I know how far I have come. I would actively avoid any situation that would bring about these feelings which only makes that anxiety more pronounced when it does happen. On arrival at the event I did initially sit down alone, but I quickly decided that I wasn’t there to do that. I was there to network and engage. And I did just that. I got up and asked if it was okay to sit with a group of people. A year ago, I would never have even considered doing that. It wasn’t the only time that I actively pushed myself during the two days, on multiple occasions, I actively looked out for different individuals, and opportunities to sit and talk with different people. From the two days I feel like it was my most significant personal developmental milestone and incredibly important for my professional development in achieving my goal to ensure people with a learning disability receive the same care as everyone. My only regret is not making an opportunity to talk to more at the event and initiate those conversations, but it is still a learning curve.
It is thanks to my professional route that I can make these developments. When working with people with learning disabilities it is very rare for me to display any signs of anxiety and it is because I am so focused on other individuals, all of those thoughts that exist day to day are shifted right to the back of my mind. It has been an essential aspect of the development of my character. I’m aware on first meeting people they would describe me as shy and reserved Whereas people I know personally, or through work, would describe me as enthusiastic and confident. They are both aspects of my character, but it is the latter that I would like people to see the most of.
Anyway, as appears to be the norm with these posts I have gone a little off topic, back to the first day. I need to say thank you to both Jennifer and Amy who just happened to be sat at the first table I took the plunge to invade – two great people who have indeed set out to ensure everyone in their university is supported on their course (they bring new meaning to the word busy). The initial activity of the day was an icebreaker. I’m sure students everywhere know these well, and I have myself already taken in part in five. It’s surprising that despite taking in part in so many, I have yet to come across one that followed the same format. I dread the day that the name game makes a reappearance. Say your name, followed by a descriptive, and repeat the names before your own. Impossible I thought, but I admit it was but a great way of remembering names. I’ll never forget the four names that came before me.
The first speaker of the day was the executive director of the Council of Deans of Health, Dr Katerina Kolyva. There was a discussion on what makes a leader, and the various leadership theories and styles that exist. But it was also an important opportunity to accept that we all have an individual leadership style and that we also share so many similarities. It was followed by Nadia Butt discussing the importance of self-care. There is no stronger statement in healthcare that to look after others effectively, we first need to look after ourselves and make that time to ensure we stay healthy. As a student, this has been a topic that has been discussed in different lectures, so it was nice to see its importance being reinforced again.
We next had an opportunity to hear from previous members of the cohort that have used the opportunities given to them from accessing the programme and to share the impact that they have had within healthcare, because of the course. Although they did talk about the positive impact it had on their own lives, it was nice to see that the proudest accomplishments were the ones they had made to peoples lives. Raluca Vagner was able to confidently express how important it is that we accept our leadership style and ensure we look after ourselves; which was an important theme of the day. The talk was also delivered alongside Nick Flanagan who, with the aid of technology, managed to still be a part of the presentation, without physically being there in such an exciting way. I know after talking to a few people, it was an inspiring talk that gave them further encouragement to make that positive impact also. All of this led on well to the group activity before dinner, which allowed us to interact and coordinate how to discuss an aspect of leadership in small groups before presenting to the room.
My group theme was that of disengagement and the dangers of being overly disengaged and equally too engaged with projects. As a group, we were quick to establish that we needed to be self-aware of our strengths and weaknesses to be able to disengage from a project effectively. We were equally understanding of just how difficult that can be. It is also a reason why there need to be those networks of trust built up, people you can step back and talk to and help you realise that no task can be completed alone. Projects require a cohesive group to support and empower each other. It is why empowerment is an essential aspect of any good leadership style. To present to a group, after only 30 minutes of preparation, is a nerve-wracking experience but it was a task that every group took on without a single blip, with heaps of encouragement for everyone within the groups. I felt comfortable within the group to happily volunteer myself to discuss the part of why we needed to disengage. I still raced full speed ahead with how I delivered it, but I felt the encouragement and confidence to stand there and complete the task. It brought an end to the main activities of the day and led to an opportunity for people to show that disengagement and relax.
I am going to skip the hotel and venue review, although I will quickly point out that all aspects deserved an A*.
Still no idea on the order of use for these forks and spoons.
I believe that there was a speaker planned for the dinner event,unfortunately they was ill, but the dinner allowed people to engage with others on a more personal level. There were still those discussions about our roles, but just as much discussion took place about the simple personal issues in life, which was a nice break to remember that we all bring a bit of our personality into everything that we do. I ended the day by putting pen to paper and writing a letter to myself, a task that had been suggested for us to do which we would open in 6 months. It will be interesting to see the change that I have made since putting pen to paper.
It will be interesting to see just what is written here.
Day 2 was an emotional rollercoaster for me. It began with a guest speaker, who was no other than Joanne Bosanquet MBE, the Deputy Chief Nurse of Public Health England. What an inspiring, and passionate woman she is! I must admit that one of her stories discussing advocacy did get me a little choked up, as it is something that I am passionate about. So to hear someone, regardless of her position, standing up and recognising that something wasn’t right was, for me, powerful. She also advocated for people in that very room on hearing their stories and empowered them to take control and have a belief in themselves and everything that they do. There have been many inspiring moments throughout the two days, but none as inspiring as the power she gave everyone to recognise how important they are. She spoke with such delight about her journey and everything that she did, and I am sure people had more questions than she had the time to answer as we led onto the next guest speaker.
The next guest speaker was a Robert Lansman, the past president of the Institute of osteopathy. I am ashamed to admit that I had never heard of the profession before the first day, until talking to a student osteopath who spoke about the profession. He advocated the vital role they play, and after listening to Robert, it appeared to be a shared desire that they had to make people aware of all they do. It was an interesting talk that encouraged the group to find out what motivates people to change and to work with those discoveries. He also shared his experience of being a mentor/coach to a student and the importance it also had on his development and understanding. A rather interesting arts and craft session followed him.
As part of the talk from Adele Nightingale, a senior lecturer in healthcare leadership, the group were tasked with creating a bounce back billy. The task allowed people to display more of their personality as we all crafted very different billy’s. But for me, as part of the talk on the importance of reflection and resilience in leadership (which had also been a session at university just two days before), it allowed people to see how we are all unique. We have very different levels of resilience, and also more importantly different ways of managing that resilience and stress. Just to note, bounce back billy didn’t survive the journey home. The glue was not strong enough to hold everything together. Instead, I had feathers stuck to the inside of my bag.
The day then moved onto a talk from Ian Unitt, and Mhairi McLellan a student learning disability nurse, and a midwife. They had both come to talk about the importance of social media in creating those networks with other professionals, and to discover new information on changing healthcare. They both discussed how they have used it to develop as professionals and the opportunities that this has led them to. Interestingly, it was because of Twitter that I had heard about the prospects of the leadership programme, and it led me to apply to be a part of the this. The use of social media is something my lecturers have encouraged from day one as they recognise the important role it plays in our development. Personally, it was so good to see another professional in learning disabilities being part of a more extensive program to promote their role. It is often misunderstood, and not actively promoted as other professions.
I was also pleased to meet two other students, both studying learning disability nursing, but equally as worrying to hear how small their cohort is. Having a small cohort increases the standard of learning you can receive, as there is more flexibility in how personal the delivery is. But, there has been a drastic downturn in the number of people applying to study learning disability nursing with some universities cutting the course entirely which risks a worrying future where more feel like it lacks the same importance as other undergraduate courses. Talking to them both gave me the opportunity to share ideas of ways we could combat this downturn, and hopefully, it is something in the future that we can work together to change.
Overall the event was refreshing and eventful, but I did need those five minutes on the train just allowing the whole experience to sink in. I am excited about the opportunities that will arise from all of the work they do, and equally seeing the fantastic projects that the other students make a reality. Thank you to everyone that took the time to talk and listen to me stumble my way through talking about the importance of learning disability nursing, and social work.
I’m sure I must have mentioned to everyone that they had missed one important aspect of my course, social work.
In recognition of international womans day I would just like to say thank you to all the woman in my life; they also happen to be the strongest and most supportive people I know.
Thank you for taking the time to read this, and I will hopefully post again soon.
Where has the time gone! Six months are now complete, and I am almost ready to begin that slightly terrifying step off moving out of the classroom and back into practice. It feels like it was only yesterday that I was sat overwhelmed staring at this piece of paper.
It has been a fantastic time, and I do feel like I have experienced and learnt so much, some of it I am sure I won’t fully remember when I return. But it is a constant learning experience, just as much as it has been my entire time when working in the health care industry. Only one week left at Uni, well technically two lecture days, and then I am out on my Spoke placement block. I have been excited to get out onto placement as I have missed being able to work with individuals. But I have to admit, that I think I will miss the classroom time just as much. Although the university experience doesn’t come to a complete end as there is still lots of learning for me to sink myself into, as well as a wealth of support available while I am out on placement.
For my first four week spoke placement I have been lucky enough to receive two different placements, both of which have a completely different agenda and learning experience to be found. I was nervous about visiting – would they like me, would I fit in, am I ready, are they engaging? All those fears where wholly put to bed within the first visit to each service. I found them both to be welcoming and eager to share their passion for their roles and the philosophy of the service they are providing to the communities. With my visit to the second placement lasting much longer than anticipated as I had the opportunity to engage with everyone. Which meant I completely lost track of time. After working in health and social care for 10+ years, it is unfortunate that I have come across people working in the industry that have the wrong outlook for the profession and see it as being nothing more than just a job. So, it is always great when you meet other professionals that are genuine, compassionate and have lots of enthusiasm for the job they do. Since starting University, I haven’t come across anyone that doesn’t share that enthusiasm. It remains the most inspiring and exciting part of university life to be able to be a part of this community of professionals, now and in the future.
I cannot wait to start on the 11th, and I am excited about the opportunities that the placements will provide me.
I’ve kept this post a little shorter than most. I know it can be challenging to find the time to read pages and pages of information, and when uncontrolled I can at times rattle on and on. So I am now attempting to keep them a little more concise; well maybe some of them at least.
Writing that title out was more than a little worrying. It was terrifying. I am not currently in a position to even be jogging to the shops. My fitness has certainly taken a nose dive lately. I have also definitely gained a little extra padding due to the lovely cake displays, on the university campus.
So I have talked about the charity that I am running for briefly before, and I will provide links at the bottom of this post so you can read more about them. But to give you a brief overview, they provide support for individuals with muscle-wasting conditions while campaigning for better support and educating other individuals such as families, carers, and other professionals. The charity was amazing in helping me to understand my girlfriend’s condition in the early days of our relationship.
I will be running the Great North Run 2019, which is a half marathon in the north east of England. It has been a while since I have run any type of distance, so it may just be that I end up walking across as the finish line, but I am determined to pass that finishing line. During my training, I will be posting updates on this blog in the hope to keep myself motivated and monitor the change and hopefully increase in running ability. I am essentially starting back from square one.
You can text donate with the above code. The amount is just a suggested donation amount and you can donate as little, or as much as you like.
The run is due to take place on the 08 September 2019. I will be mixing life, work, study and university with running, but I do believe I can achieve the task of completing the half-marathon.
Any support that you can give would be appreciated, and even the smallest donation can make a big difference to the work the charity does.
Thank you for your time, and have a great day. Evan.
I should begin this by discussing the choice of language used here. It is presented in a way that represents how the question was recently put to me. Language, when describing disabilities, or just about anyone, can either limit the individual or empower them. I have worked with people who feel placing emphasis on the disability before the person is failing to recognise that they are, first and foremost, a person just like everyone else. But I also understand that for a lot of people their disability can be something that defines them, and is a major part of their identity.
It is how we historically view the word ‘disabled’ that judges the context of its use. Unfortunately, it has a history of being used to segregate a part of society as different from ‘the norm’ when viewed through the medical model. So, it has almost become a dirty word, and it is tarnished with a poor history of acceptance in society. In reality, it should be embraced. Not only does it allow the law to be written that challenges discrimination, and it clearly defines the additional support or adjustments that must be made to support. It also enables us to acknowledge their individuality. I do see the person before the disability, so it is how I will use it from here on. I know it is a topic that is ideally debated by people with a disability.
Anyway, I digress. I don’t see Abi any differently to anyone else I have dated, but I do (now) recognise that there are additional challenges in dating someone with a disability; they just don’t change the way I feel about her. Every relationship faces different challenges that others may not encounter.
Dating – The early days
When I first started talking to Abi, it was before she was diagnosed with Limb-Girdle Muscular Dystrophy so the topic of disability never really came up. It was only when I asked her out on a date that I learnt more about the diagnosis, and because we had always gotten on so well, I gave it little thought. I did not know much about the condition and only looked into it very briefly before we met. It was naive of me to think that I should put it to one side and focus on her, as it does affect what she can and cannot do. The irony is, on trying to treat her as I would anyone else, I failed to take into account the one thing that would provide an obstacle in doing this realistically. Anyway, despite this, the first date went amazingly, and I realised that I would be doing her an injustice if I did not learn more about the condition.
When dating anyone with a disability, it is really important to educate yourself on just what the disability is and what it means to them. I spoke to Abi, as she has always been candid about how it affects her, and I also talked to the charity Muscular Dystrophy UK about the condition. It did impact how dates where planned, or the types of activities we did, but not negatively. I still spent them getting to know Abi more, and they provided us with some very memorable memories that we still laugh about to this day. Sometimes it just meant that we had to be a little more creative in what we chose to do, but it also meant we communicated more.
A healthy relationship
I believe there are many important aspects of any kind of relationship. To me, the ones that matter to me the most are communication, honesty, trust, empathy, and patience.
Communication is a vital part of any relationship. It is especially important in a relationship with someone with a disability. You need to be able to communicate just what you are thinking to each other. It helps to limit misunderstandings and helps to nurture that empathy and trust in each other. Abi and I rely on humour for dealing with any difficulties; things don’t always go well, and activities can sometimes be frustrating when faced with barriers. You need to have the confidence to make light of an issue. Well, when it is appropriate. My sense of humour is going to end up with Abi choking, or her eyes are just going to roll right out of her head. There are many hits and misses.
You need to be honest with each other, and it goes hand in hand with communication and trust. I know for Abi there was an initial fear of inadequacy and the thought that she could not be loved with a disability. It is a fear that fundamentally haunts everyone, the feeling that they do not deserve anything better than the hand that they have been dealt; it is one I have felt myself. Without honesty in the relationship, these thoughts and feelings would only go unchecked and would be unhealthy for any relationship. It is my only hope that I have ensured these ideas have turned around and she now sees herself as the loveable and equal partner that she is.
It is the communication and honesty that harbours trust in a healthy relationship. You need to be able to trust each other that you are enough for each other.
Now it is impossible to fully understand how a disability can impact someone if you do not face the same obstacles in daily life, but with empathy, you can understand how to be there to support. And equally, it allows Abi to understand how it also impacts on me. It can be a frustrating experience because you want the best for the people that you care about the most, and you gradually start to realise how the world is designed in such a way that it makes it difficult to achieve this fully.
Patience is important. Things will not always be easy and straightforward. There needs to be patience to allow that understanding to develop each other’s needs in the relationship. I am sure in the early days of the relationship I made silly mistakes, which may have arisen from simple misunderstandings of needs. One particular area I know where Abi needed a lot of patience with was me learning just how to push a wheelchair. There were many moments of me catching strangers, walls, chairs or just anything that happened to be around. I forever forgot that she had footrests. People are going to make mistakes.
Challenging views
So possibly the most difficult part of dating someone with a disability is challenging some very peculiar views. I love to talk about Abi to people; she is, after all, a significant part of my life. And it has in the past been met with “Awww’s”, or “she’s lucky to have someone like you”. It is almost like the able-bodied person deserves some admiration for facing the challenge! Which devalues the importance of the other person in the relationship. I believe that I am the lucky one to have Abi in my life, and not because of her disability but because of the person that she is. I am in a relationship that is full of all those healthy factors described above. I have yet to have one argument, or falling out, with Abi in the almost two and a half years we have been together. That is not to say we agree on everything, we have many healthy discussions and share very different opinions on lots of things, but we accept these. Abi is a much more realistic and pessimistic person, and I’m more optimistic and positive, but we balance each other out. It should be mentioned that it does not represent everyone spoke to, but it does happen.
I would like to think that we are lucky to have each other.
We live in a country with many different barriers,
and despite working in the health sector for ten
years, supporting adults with learning disabilities and physical disabilities,
I failed to notice just how many barriers there are to people simply moving
about in their communities; this was until I met my girlfriend.
She has Limb-Girdle Muscular Dystrophy, which means she now requires the use of a wheelchair to get around. When I plan to do anything with her I have always taken the time to look into how accessible the place is that we plan to visit. It may just be checking there is an accessible toilet, a ramp into the building, or a lift. While also booking any transport assistance we may need; ensuring there are ramps onto the train, and that the train station is accessible. I never imagined that I would need to see the state of the footpath or if there were misplaced street signs (there are many just placed centre path, and one local that blocks the dropped kerb).
We have visited so many wonderful places and some truly beautiful cities, despite having issues with the kerbs and footpaths. It all came to a head when we visited Leeds and decided to visit the Medical Museum. The museum was great. The journey there, not so great. Although we could have taken a bus to our destination, waiting for a bus to be told there are no available wheelchair spots can be a disheartening experience. So we decided to skip the bus and wander there. And Google Maps had informed that it was only a short 10-minute journey away. So why not? And I let it plot a route for us both. So of we went.
After 10 minutes we just assumed we were maybe moving a little slower then Google expected, we were following the map after all. Then we hit our first snag, a footpath that ended with a dropped kerb. Unfortunately, the following path had no dropped kerb to get onto the footpath. We had to walk into the road to follow the path to a point which we could get back onto the footpath. It was not a great experience, and not one I could imagine anyone in a wheelchair doing alone. We honestly believed it could not get any worse. We were obviously very wrong. The route took us past a working garage, with all the cars parked on the footpath. Back onto the road we went! We had six more footpaths that had no dropped kerb, or dropped kerbs that are impassable as the road around them is broken. In total, it took almost an hour to get where we wanted to. We obviously decided to try and get a bus back – no wheelchair spaces available. So we walked (and rolled) back, taking a completely different route, with ZERO issues.
How come this route had not been offered up as an option initially. It was accessible. The issue puzzled and annoyed me for the rest of the week. Google does not have a solution to offer people accessible routes, and only determines the route based on a projected time the journey would take. It makes the presumption that you have no disability. As we move to be a more equal society, it is not something I am not comfortable with. Things need to change.
It is the negative experiences we have in life that have the most impact on our wellbeing. It is something that I feel has a massive impact on a large part of society. I have talked to other people who have had similar experiences. These experiences can only lead to an increased sense of isolation for any individual with a disability, and they should have the same confidence, and support, to access their communities or explore new ones as anyone else. I believe that technology can be a powerful tool in creating a more accessible world and it is why I have been working on the accessible maps in my spare time.
Working on an accessible map has not been an easy task. There is a very limited toolset available to support their creation natively within Google Maps. I also have very limited experience of using any of the tools that are available, so it has been a steep learning curve. Ideally, I could create an app that allowed a community developed map. One which took into account the experiences people with disabilities have in navigating their community. Again, just no current knowledge of how to do this. But the five main features would be:
Location of all pedestrian crossings.
Location of all
dropped kerbs with tactile paving.
Location of all dropped kerbs.
Location of any common obstacles.
An option to use
these plotting points to create an accessible route.
So far I have plotted over 16000 map points in Sheffield. It includes around 90% of the dropped kerbs, and pedestrian crossings in the Sheffield District; with some overlapping into Rotherham/Derbyshire districts. The data has taken some time to record, as I have had to either visit the street or use Google Street View to discover where the lowered kerbs and crossings are.
Ideally, the map pointers would be hidden to create a seamless system to create an accessible route.This is where Google Maps has reached its limit with the map pointers that it allows.I had to create a crossings icon to ensure I could easily spot the difference between a dropped kerb, and pedestrian crossing point. The PEDS Icon.It is by far the largest spreadsheet I have ever created, and it keeps on growing.
I have requested
the information of dropped kerbs and pedestrian crossings using freedom of
information requests. Unfortunately, no council has been able to respond with
the location of dropped kerbs, and the data on pedestrian crossings is limited
and taking time to sort through to ensure it is correct and complete.
There is a major issue with plotting this data onto Google Maps, as I have reached the limit of map pointers that the map allows. I have been in contact with the Google Access team on ways this could be managed.
As part of the project, I have taken the time to email a few charities about taking the idea on and further its impact. The time should be taken to say thank you to the amazing Kiera at Muscular Dystrophy UK and Kara at AccessAble. They have both supported the idea and helped to forward the project on so it could progress further.
Hopefully, I will be able to provide a part 2 at some point in the future. Thank you for reading and please take the time to check out the map below. Any help is always welcome.
A Journey To Change 