Interview | Accessing University as a Disabled Student

My good friend Lucy recently graduated from Canterbury Christ Church University with a First class honours degree. Like me, 24 year-old Lucy who lives with her family in Kent, has a progressive form of muscular dystrophy.

Now that she’s free from study, I thought I’d grab her for a chat and ask a few questions about her university experience from the perspective of being a physically disabled student.

Perhaps the insight, information and advice offered here might be helpful to anyone out there with a disability who is applying to university or considering higher education.

Lucy with her carers and peers at university.

1. Hi Lucy, can you please describe your disability and how it affects you.

Hey! Right, so…I have Congenital Muscular Dystrophy – Merosin Deficient, meaning I lack the merosin needed to knit the layers of my muscles together. Because of this, I get progressively weaker over time due to my muscles being unable to properly repair themselves.

This weakness means I can’t really do anything for myself without support from other people. It also makes daily habits difficult as I lack the strength to hold things and do things. A few examples might be that I find it difficult to feed myself as I find certain cutlery too heavy to lift, I can no longer read books unless they’re digital as I cannot hold them or turn pages, and I need regular hoisting for transfers and the bathroom.

Being a muscle defect, my organs and my lungs in particular are affected, meaning I have regular medication and ventilator intervention to aid my breathing. Lying down helps with this, as well as only being able to write/type lying down, which means I lie down most of the time.

2. Did your disability put off going to university?
And what, if any, concerns did you have prior to applying for university?

I knew it would be difficult to apply to university but I wouldn’t say my disability ever “put me off” of applying. I’ve been very lucky with my education in that my parents have always pushed for inclusion and for me to receive education befitting my abilities. I went to a mainstream primary school, a grammar school for my secondary education, and college after that. So applying for university, whilst scary, was the logical next step for me.

That’s not to say I didn’t have any concerns regarding how I would be able to access higher education with my disability. One of my main worries was that Uni is a very different environment from school in that the campus is a lot bigger! Having hoists and a portable bed so I can lie down is all well and good when it’s accessible but, what if I was timetabled for lectures in a different building to my equipment? It wouldn’t be possible to transfer every 5 minutes, so it took a while to negotiate a timetable solely in one place – it was tough but doable.

3. Could you please explain the application process and any challenges you faced?

The application process itself was exactly the same as if I were an ‘able-bodied’ student – I applied through UCAS and SFE (Student Finance England). However, perhaps most importantly for me, I also had to apply for extra DSA (Disabled Students Allowance) as well. It was the next steps that were a bit different…

After applying and being accepted, I began having regular meetings with the disability officer who would be supporting me during my time at Uni. The disability department at my university in particular was split into different fields: physical disabilities, learning disabilities, and mental health.

We discussed suitable timetabling, storage for my hoists and bed, even suitable places for my carers to chill out whilst I was in lectures. It was all sorted over the summer months before term was due to start.

I chose to live at home with my family throughout the duration of my course (2015-18) rather than on campus, so that was one less thing to organise.

4. What support did you receive and was it difficult to get this support in place?

I have my own team of personal carers, provided by an agency, who supported me whilst a student. In my case, this wasn’t something the university or disability officer organised or supported with.

The DSA I used mainly to pay for transport. I paid for a wheelchair-accessible taxi to take me to Uni or the library each day. The finance was also used to supply me with a MacBook and accompanying software such as Dragon Naturally Speaking and Claroread, as well as a printer and allowances for things like ink cartridges and paper.

I personally found the process of co-ordinating with my disability officer really straightforward at the beginning. She really listened to what my needs were and to the best of her abilities made sure everything was in place before I started my course. However, it was once I had enrolled that her involvement became less proactive. I think a major learning experience for me would be that I should have been more proactive myself in maintaining regular contact with her.

There are undoubtedly going to be a number of disabled students on the system at whichever university you attend. Therefore, I would say if you feel you need help or advice, don’t hesitate to ask! Because, when I did ask, she generally followed through. I only wish I’d asked for her help a lot more than I did.

5. How would you rate your university experience from a disability/inclusivity perspective?

Looking back on my experience as a disabled student, I’d rate my experience quite highly to be honest. There were certain things I found more difficult but generally I was included really well. I was able to lie down in lectures and participate fully, timetabling was set so I remained in one classroom for the entire day (something which my peers were VERY appreciative of, and made it known to me regularly). My equipment both on campus and at the library was easily accessible and staff were very helpful in its safe storage. All members of staff – from lecturers to security and housekeeping were continuously supportive and understanding of my needs.

6. In your opinion, what improvements need to be made to make higher education more accessible to disabled people?

As previously mentioned, I’ve been lucky in having the family support and confidence to access university, but I know how difficult it can be to have that confidence. I think one of the main reasons for this is because the process isn’t made clear or obvious. I mean, I had to work out my own process moving forward after my application. Whilst every process for establishing individual needs at Uni is going to be different, I think it’s important that the availability of such a step is highlighted.

I think UCAS and all university websites should, as a minimum, have a clear disability section outlining key contacts of enquiry. It’s far easier to make confident decisions if you’re fully informed and know that there’s going to be the support you need behind you.

I won’t rose tint – accessing higher education as a disabled student can be like having to find your own way in the dark! By no means is it a clear, easy-to-follow process.

7. What advice would you offer other disabled people considering university?

Having now completed university, I guess I’d advise others to try their best not to get anxious about the process. Yes, it’s daunting. Yes, it’s tough. But ultimately it is worth it.

As long as you’re clear and assertive about your needs, there will always be people around to support you. If you need support with campus or timetabling issues, ask the Uni. If you need help in class, ask your lecturers. If you need a pen, ask one of your peers! It all sounds really obvious and stupid but I can’t stress enough how important it is to just ask for help. But most importantly, be confident in yourself and just be yourself!

8. As a physically disabled individual, what do you consider to be the potential challenges around the social aspect of university life?

I think the social aspects of life in any context can be difficult for disabled people but at Uni it can be especially hard for some. I think one of the most important things to remember is that, actually, it’s not just you and it’s definitely not just disabled people that have this issue.

Many students relocate for university, sometimes half way across the country, sometimes half way across the world. So you’re all going to be in the same boat in that respect.
However, I’m not dismissing the fact that disabled people have it tougher than most. I think the most important thing is, once again, confidence. Many people lack the confidence to introduce themselves to disabled people for a multitude of different reasons – they don’t know what to say, they don’t know if you can respond, they don’t know if you want to be spoken to. All of these things can seriously put people off because they don’t want to embarrass themselves, or you for that matter, so it’s up to us to have the confidence that they lack.

Introduce yourself to people at Freshers’ Fayre, be an active member of your class and, if possible, join a society or two. Be the best version of yourself and people will be drawn to you.

*All images courtesy of Lucy Hudson.


I’d like to thank the lovely Lucy for putting up with my interrogation! 

She is in fact a brilliant poet, having co-authored the poetry anthology ‘Wheels of Motion’ which can be purchased here!

You can also follow Lucy on Twitter


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Britain’s Got Talent | Disability Representation

Are you a Britain’s Got Talent viewer? If like me, you have tuned in this year, you too may have noticed that the semi-final line-up features a number of diversely disabled acts – more so than previous years.

As a wheelchair-user myself, I am thrilled to see disability increasingly represented and celebrated on such a high-profile primetime TV talent show.

Lee Ridley AKA Lost Voice Guy

Lee Ridley, also known as Lost Voice Guy, is the first act through to the live final, having won the audience vote on Monday night. Hotly tipped to win the competition, Lee 37 from Newcastle, has Cerebral Palsy and is unable to speak. This uniquely speechless comedian uses a Lightwriter – a voice synthesiser, and as he says, “walks with a limp”. He is a BBC New Comedy Award Winner who wears slogan T-shirts depicting his self-deprecating and inclusive sense of humour – his audition shirt read, ‘I’m only in it for the parking’.

Lee Ridley AKA Lost Voice Guy

Lost Voice Guy wowed audiences and judges alike with his witty routines that draw attention to and highlight the humour in disability, thereby breaking down barriers and removing social stigma. The “struggling comedian who also struggles to stand up” joked that he “really is disabled. It’s not just really good acting”.

Robert White

Fellow comedian Robert White who has dyslexia, autism and Asperger syndrome, also made it through to Sunday night’s final with his hilariously quirky musical comedy act. The 41 year-old music teacher from West Sussex describes himself as “the only gay, Aspergic, quarter-Welsh comic on the British comedy circuit”.

Though his audition proved impressive, White really upped his game for Wednesday’s live semi-final, in which he employed natural comedy timing to mock the four judges. Accompanied by a keyboard, Robert White flirted with his “next boyfriend” David Walliams and quipped that Amanda Holden dresses far too young for her age, while Alesha Dixon dresses like a hooker! This was met with unanimous rapturous applause and laughter.

Comedian Robert White

Most notably, Robert directly referenced the sensitivity surrounding his condition during his live act: “I am aware that if you mention autism on stage sometimes audiences can go awkward and silent”. This effectively challenges viewers to consider how they receive and react to those of us with a disability, thus initiating the conversation.

Calum Courtney

This year’s youngest finalist is 10 year-old singer Calum Courtney who has a mild form of autism. Calum sailed through to the final after melting hearts with his reworked rendition of Stevie Wonder’s ‘Isn’t She Lovely’, in tribute to his Mum. He didn’t win the overall public vote, but having made it into the top three, was put through by the judges.

Calum Courtney

Calum was part of the line-up at the NSPCC Winter Charity Ball in aid of the National Autistic Society. His endearing and confident audition performance of Michael Jackson’s ‘Who’s Loving You’ caught the crowd’s attention and earned a standing ovation. It just goes to show that even at such a tender age, autism need not be a barrier to success.

RISE Unbroken

Semi-finalists RISE, a group of young dancers from Manchester, presented two moving performances, though they did not make it through to the grand final. Group member 13 year-old Hollie Booth was caught up in the Manchester Arena bombing at an Ariana Grande concert in May 2017. Hollie’s aunt Kellie was one of 22 people who died as a result of the terror attack.

Manchester dance group RISE

Hollie broke her knee, left foot and was left with nerve damage. She has so far had 11 operations and now has to wear an orthotic and use a wheelchair. She was keen to return to the group and continue dancing despite her trauma and the injuries she suffered. As a mark of solidarity and inclusivity in the face of adversity, all RISE dancers incorporate wheelchairs into their routines. The tearful judges hailed the girls as “inspirational”. In this case, I think the term is justified!

B-Positive Choir

Final mention goes to B-Positive – the official NHS Blood and Transplant choir. The choir consists of 60 singers all of whom suffer from, or are directly affected by, sickle cell disease. Their aim is to raise awareness of the urgent need for blood donation. They sang the “powerful” anthemic hit ‘This is Me’ (a true statement of the importance of diversity). They are hoping for a wild card pass through to Sunday night’s final.

B-Positive Choir

The inclusion of so many disabled acts in this year’s line-up will, I believe, have a positive impact on the disabled community. It suggests and promotes forward-thinking, equality and disability in the mainstream. Furthermore, it inspires open discussion of diversity in all its forms whilst also encouraging society to focus on ability as opposed to inability.

Widespread visibility of disabled talent within the media will naturally be met with questions and curiosity. But that’s okay because it signifies progressive inclusivity.

Many people are talking about the acts they have seen on Britain’s Got Talent. Audiences are realising that it’s acceptable to celebrate disability and to laugh about it! It is okay to ask questions since this educates and informs, thereby resulting in familiarity, recognition and ‘normalisation’.


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Disability & Identity

I was recently invited to participate in a Quality of Life Study, conducted by students at Sheffield University. The ‘Living Life to the Fullest’ research project is aimed at young people (18-30) with life-limiting or life-threatening impairments.

Although data provided by participants is anonymous, I thought the questions asked, along with my personal perspective, might be of interest to some of you.

Below is an extract from my interview. I’d be really interested to know your views and how you might answer…


Do you think the general public hold an accurate understanding of disability? Why or why not?

No, I don’t. I think people who have never had any particular connection or interaction with disabled people lack the knowledge, experience and empathy required to hold an accurate understanding of disability. Furthermore, I think there’s a lack of awareness of how diverse disability is and how many people it actually affects.

I also think people’s perceptions of disability are heavily influenced by the depictions they see in the media. Depictions of disabled people played by able-bodied actors can be very misleading for various reasons. Quite often these portrayals are ‘airbrushed’ and sentimentalized.

The next topic is about your relationship with yourself. Do you have a strong sense of identity? What factors contribute to your identity?

I’m really not sure to be honest. I guess that implies that I don’t have a strong sense of identity. I’ve never really given this question much thought.

I’m not a fan of labelling or categorizing people. At the end of the day, we are all very different, unique individuals.

I guess, in the simplest terms, I am a daughter, a sister, an auntie and a friend. Despite the fact that I often blog about certain aspects of my life, I am actually a very private person who prefers to remain anonymous (or at least, as anonymous as possible).

I identify as somewhat of an introvert. I am incredibly insecure and self-conscious (painfully so) due to my physical disability and the presence of my powered wheelchair. I do feel like people look at the chair before they see me.

I’m very much aware of how different I look compared to ‘normal’ able-bodied people, and how others view and perceive me because of this. I think, because I am so lacking in confidence, my sense of self and identity is negatively impacted.

I am much better at thinking, talking about and dealing with other people and their problems versus my own!

Do you identify as disabled? Has this changed over time?

Yes, I do identify as disabled, though my disability does not define me as a person. I have no problem with the term, nor being referring to as a disabled person. It is simply a matter of fact. In the same way I would describe myself as a white, British female, I am also physically disabled.

I have Ullrich congenital muscular dystrophy. There is no hiding or escaping from it, therefore I choose to accept and embrace it.

Since I began blogging, I have noticed a lot of discussion, within the disabled community, regarding the topics of terminology and semantics. There are those who take offence at being identified as, or even labelled ‘disabled’. Some may prefer terms such as ‘differently abled’. (Personally, I find this descriptor a little ridiculous and would never refer to myself as ‘differently abled’). Then again, there are those who don’t consider their impairment to be a notable part of their identity at all.

My view on this has remained consistent throughout my life. My condition is congenital, meaning that I have lived with it from birth and have always been aware of it. I am disabled. In all honesty, I really wish I wasn’t! But the fact is, I am. To me, there’s really no point in denying or ignoring this part of my identity.

You’ve mentioned your thoughts around how others perceive you and how you therefore perceive yourself. Does how you think others perceive you (or even how you perceive yourself) change depending upon context (e.g. at work; with family; with friends)?

I think the way others perceive me varies depending on context. If I’m out and about amongst the general public – for example, shopping with friends – I do notice looks and stares from strangers. It can be bothersome. Some people are so indiscreet and don’t think twice about glaring!

Complete strangers have approached me in the street, clearly feeling entitled to pass judgement and make offensive and inappropriate comments regarding my disability. For instance, a man once asked if I believe in God. Put on the spot (and obviously quite shocked) I hastily answered, ‘no’. He then told me that is the reason I am in a wheelchair!

However, for the most part, I don’t take offence at people looking or staring, so long as they are respectful. I appreciate that by nature, people are inquisitive. All of us, myself included, are curious about anything considered different or not the norm. For this reason, I will happily answer disability-related questions from people who are polite and considerate.

I can’t speak on their behalf but in general, I think (or assume) my family don’t even see my disability. I’m just Carrie. The only time it really smacks them in the face (so to speak) is when I get ill.

In terms of how I perceive myself, I think this is fairly consistent regardless of context. I am very self-deprecating and self-critical. Essentially, I have always wanted to fit in, especially during my school years. I want to be able to do all the things able-bodied people can. I want to be independent, to drive, to walk, to run, to be spontaneous and do things without having to plan or rely on others.

This research project is about young people with ‘life-limiting’ or ‘life-threatening’ impairments ( LL/LTIs), the next questions surround living with that.
What does ‘life-limiting’ mean to you?

I consider myself to have a life-limiting condition (Ullrich congenital muscular dystrophy). I have come to terms with the fact that my disability will inevitably impact how long I live. Although people with the same condition are now living longer thanks to various treatments and medical intervention, life expectancy is still much shorter than the average person.

I dread winter and all the viruses circulating throughout the community. Every time I get a cold it leads to a chest infection. For me this is very serious since it often develops into a more complex issue. Many times over the years, I have been admitted to hospital with respiratory complaints including pneumonia, pneumothorax (collapsed lung) and pleurisy.

*I did elaborate further during my interview, though for personal reasons, I have chosen not to include the rest of my answer here.

Does this impact any decisions you make?

YES! All of my decisions. I had a particularly bad bout of pneumonia in 2013. It took many months for me to recover and was incredibly difficult to overcome, both physically and mentally. At that point, my priorities changed.

Up until then I had been pursuing my aims of moving out of my parental home, and finding employment….but after realising how fragile my body actually is, I decided to end the lengthy quest for accommodation – an incredibly stressful quest that I had been struggling with for over two years, without assistance!

My primary focus now is health and happiness. I have to do what is best to protect and care for my body.

*I have chosen to remove parts of my original answer to this question.

Do you feel like it is important to set goals? And does anything stop you from doing this? Are your goals are shaped by what support is assumed to be/not be available or by the support you currently receive?

My mother keeps encouraging me to set goals, like aiming for at least one holiday per year. She wants me to make the most out of the time I have – however long or short – which I understand and agree with.

In August 2017, my first nephew was born. This has been the biggest motivation for me to keep going – to pursue good health, happiness and to embrace life!

I am so much happier since he was born – everyone has noticed. I often say, I hope to live long enough to see him grow up. I want most of all for him to remember me. So this is my biggest goal.

This question is rather pertinent as I currently have only one part-time PCA (personal care assistant). She is very young and hates driving my wheelchair accessible vehicle. As a result, I feel very isolated and excluded from society. I would like to be able to get out, to meet friends and go to events. But right now I am unable to, as I don’t have the support in place.

You have talked about not being able to get out of the house. Would you say you ever feel lonely or that you miss out because of your disability?
Do you miss out more because of your own health problems or accessibility issues?

Yes, definitely. There are times I feel lonely even though I am by nature quite a solitary person. I am more than happy with my own company – it’s a good job, really!

I’m not a fan of social media at all. But like it or not, for me it is a lifeline. Without it, I would feel incredibly isolated. I mostly use Facebook Messenger in order to stay in touch with friends and to meet others in a similar position to myself.

Health problems as well as accessibility issues contribute to missed opportunities. So many times I have made plans, then had to cancel due to ill health – usually chest infections. Because of this, I am now very reluctant to make future plans for fear of disappointment.

For example, I finally managed to book tickets for the Strictly Come Dancing, January 2017 tour. I was so excited and had looked forward to it for months. I then caught a severe chest infection and was unable to go. It may sound dramatic but I was gutted. I had tried to get tickets for years but couldn’t, as the limited accessible seating was always sold out.

What worries you about your future with a complex condition? What would you say is your biggest worry?

I worry most about my health and my ability to fight respiratory illness. As a kid, when I got a chest infection I would need a course of antibiotics and a week off school to recover. However, as I have aged, the duration of these illnesses has gradually increased. They have become much more complex to treat too. These days, it takes everything I have to overcome a chest infection. I worry about how many more times I am able to do it and therefore what I might miss out on in life.

How has your family been impacted (for better or worse) by your disability? For example, has it affected them financially or affected your relationships with them? How do you feel about this?

Wow – there is no end to how much my family has been impacted by my disability!

Yes, very much financially. For one thing, I have a ground-floor bedroom/bathroom extension that was built in 2000. Back then, my parents’ income was assessed. They were entitled to a partial grant, though this was a very small sum. In order to fund the build, they had to take out a second mortgage.

Holidays are MUCH more expensive than they would be for the average family. Medical insurance and the need for accessible accommodation, plus equipment hire makes vacationing rather costly.

Essential mobility equipment such as manual and powered wheelchairs are a huge expense!

Furthermore, my parents are affected physically (owing to many years of lifting and manual handling) and emotionally. Obviously they are aware of the fact that my condition is life-limiting, even though this is not discussed. When I am hospitalised, my whole family experience a great deal of distress.

Relationships are inevitably affected. At the age of 29, I still live with my parents in their home, and we are very much in each others pockets. They remain my primary source of support. I am unable to escape when disputes occur – to go for a walk or a drive in order to ease tension and let off steam. This I find incredibly frustrating.

What makes for a good community in regards to disability?

I’m really not sure how to answer this question. Sadly, I don’t think this can ever be fully achieved, as there will always be prejudice, ignorance and exclusion. I think crucially, there needs to be greater awareness, familiarity and education so that disability becomes part of the norm. We need to work in unity to break down barriers and make disability socially acceptable.

How do you feel about dating with a disability? Do you think it is harder when you’re disabled?

It is definitely harder with a disability – or so I have found. I think one of the biggest obstacles is the initial meet and greet stage.

We (disabled people) face assumptions, social prejudice and environmental limitations e.g. Access to buildings and public transport – thus making dating all the more challenging. Then there are our own physical limitations.

I am completely non-ambulant, I have contractures, a severe scoliosis and overall muscle degeneration. These physical limitations have made me overtly self-conscious, socially awkward and anxious when meeting new people.


Thanks for reading! If you found this interesting, leave a comment and share so that others can join in the discussion.

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Interview | Life with my Assistance Dog

“Petworth has changed my life greatly…he has given me a reason to get up every morning.”

I recently had the pleasure of chatting with the lovely Harriet Butler about life with her beloved assistance dog, Petworth.

Harriet, 26 from Worcestershire, studied media and cultural studies at University and currently volunteers at KEMP hospice. Like me, she has a form of muscular dystrophy.

Here she explains all about the application process and why she wouldn’t be without her canine partner…


1. What is your disability and how does it affect you?

I have Duchenne muscular dystrophy. This form of muscular dystrophy predominately affects boys but in rare cases females like me can have the condition. Duchenne is a progressive muscle-wasting condition that affects every muscle in the body. I was diagnosed at the age of nine. When I was younger I was able to run and jump around but over time things became more difficult and eventually impossible. When I was twenty-two, I broke my ankle and now I am unable to weight-bear and so I rely on a wheelchair to get around.

2. What made you decide to get an assistance dog and what did the process involve?

Several years ago I visited the dog show ‘Crufts’ at the Birmingham NEC. Whilst I was there, I watched an assistance dog demonstration. I was blown away by what the dogs could do.

In June 2014, I had a spectacular fall and broke my ankle. Before my accident I could still walk short distances on the flat. I had surgery in which pins and plates were inserted. I had hoped I would be able to regain my mobility but it became apparent that this would be impossible. Once home and in a difficult place in my life, I applied to Canine Partners. They are a brilliant charity that provides assistance dogs to those with physical disabilities.

Once I had applied, I was invited to an assessment day at their centre in West Sussex. I met some incredible dogs and did some task work to see how a potential assistance dog could help me. I also had an Occupational Therapist come out to visit my home. She checked that my garden and home environment were suitable. I was then added to the waiting list and Canine Partners would start the process of finding me a suitable dog. They try to find a dog that fits in with your lifestyle and the tasks you need help with. For instance I required a tall dog to pass me items because I am quite high up in my electric wheelchair.

Eventually I got the much-anticipated call from advanced trainer Chrissie to say they had found me a potential dog. I was invited to meet Petworth and it really was love at first sight. We seemed to click straight away and I really liked how unusual he looked. Petworth is a curly coated retriever Labrador cross. He has extremely long legs and a lovely curly coat. We discussed the tasks I would like him to do. The following day, Chrissie phoned to check that I wanted to go ahead with Petworth. Of course, I said yes.

The final stage involved going on a two-week training course and learning how to work with Petworth. I have now had Petworth for over two years and I couldn’t be happier.

3. How does Petworth assist you and how has he changed your life?

Petworth can assist me in so many ways, providing me with a degree of independence away from carers. He picks things up when I drop them (I do this very often due to my reduced dexterity). He gets help when I need it; he goes and finds my Mum. He brings the post to me when it arrives. He opens and closes doors around the house and also pushes automatic door buttons when I’m out. He turns on and off the lights in my room and bathroom. He assists me with taking my coat/jumper off and shoes and socks. He fetches my phone for me if I leave it in a different room. He is able to open and close cupboards so at feeding time he fetches his bowl for me. He also helps me tidy up by putting his toys away in a box. When we go shopping he can help getting items off the shelf. Once we are finished shopping, Petworth can help me pay and gives my purse to the cashier.

Having just written down the things Petworth does for me, I’m quite amazed. He really loves to help me but it isn’t all about work, he still gets time to be a normal dog. We both enjoy going to the park or going on a long walk. One of my favourite things is teaching Petworth a new task; he is a very quick learner. As my condition is progressive I can train Petworth to do more tasks that will benefit me in the future.

Petworth has changed my life greatly. In many ways he has flipped it upside down. Before I had him I was too scared to leave my house. I was always worried I would drop my phone or keys. I always felt like all eyes were on my wheelchair and me. I didn’t have a social life and I became very isolated. Now I feel like a different person as Petworth gives me so much confidence. People are more interested in Petworth than my chair. He is a fab talking point and people love to ask me questions. I don’t have to rely so heavily on carers. Most importantly he has given me a reason to get up every morning. He looks after me and I look after him.

4. What, If any, are the challenges of having an assistance dog?

This probably sounds cheesy but I don’t think it is a challenge. Petworth really has enhanced my life and opened up many doors…literally!

The main hurdle we face is good old British weather – come rain or shine Petworth needs a walk. This means wrapping up warm, getting my waterproofs on and embracing whatever Mother Nature has to throw at us.

I was initially worried that I would struggle looking after a dog due to fatigue, but in reality Petworth gives me more energy by completing his tasks. I am responsible for exercising, grooming, feeding and playing. This has helped me maintain some muscle strength and it has given me a purpose and a sense of achievement.

5. What would be your advice for others who are considering getting an assistance dog?

Go for it! Having Petworth has completely changed my life and an assistance dog could do the same for you. I know some people think I’m too disabled or I’m not disabled enough but I still recommend applying. I would try to speak to somebody who already has an assistance dog to see what is involved and if it’s for you. The best advice I can give is be patient. It is not a quick process and the charity waiting lists are long at the moment, but it really is worth the wait.

*All images courtesy of Harriet Butler


I would like to thank Harriet for taking the time to answer my questions so thoroughly.

For more information about assistance dogs, visit the Canine Partners website.

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Interview | Amberly Lago

True Grit and Grace: Turning Tragedy intoTriumph

Former athlete and professional dancer Amberly Lago suffered a horrific motorcycle accident in 2010 which severed her femoral artery and shattered her right leg almost beyond repair. Despite her debilitating, life changing injuries, Amberly has transformed her life and is now a fitness trainer and motivational speaker, inspiring thousands with her resilience and ability to thrive.  

In her remarkable memoir, ‘True Grit and Grace’, this Texas girl instills hope to keep moving forward by sharing the tools and strategies that have worked for her. The determination, defiance and gratitude she demonstrates encourages readers to find resilience in their own difficulties. By refusing to give up, Amberly has admirably commited herself to regaining her active lifestyle, thereby proving it is possible to hit rock bottom and still find the strength to get back up.


1. Amberly, could you please tell Disability Horizons readers how your disability affects you and how you continue to cope with ongoing, chronic pain?

Following my motorcycle accident in 2010, I was diagnosed with Chronic Regional Pain Syndrome. CRPS is known as “the suicide disease” because it causes constant chronic pain. It’s ranked highest on the pain scale and has no known cure. When I was first diagnosed, I was told I’d be permanently disabled and wheelchair-bound.

At first I lived in denial and pretended nothing was wrong. Behind my smile, I was dying inside from physical and emotional pain. Everything I read about CRPS left me feeling hopeless. Still, I continued moving forward, despite the feeling of a vice grip on my foot and battery acid through my veins. I tried every kind of treatment for my pain, including a spinal stimulator, nerve blocks, ketamine infusions, Eastern and Western medicine, and anything that claimed it could bring me relief.

It wasn’t until I accepted the fact that I had CRPS and what I call my “new normal” that I began to show myself the self-love and self-compassion I needed to start to feel better. I wish I could tell you I found some magic pill or movement that relieves my pain, but the truth is, every day is different, and so are my pain levels. What works some days doesn’t always work the next, so I just keep trying, and doing, and praying.

When I am in pain, I go through my list of helpful tools. There is no particular order.

I practice mindfulness, meaning I do whatever I can to stop thinking about and focusing on my pain. I surround myself with positive people. No more doggy downers, only puppy uppers!

I count my blessings and practice gratitude.

I give myself permission to rest on a flare day and remember that I am doing exactly what I need to do. I am recovering.

I eat an anti-inflammatory diet.

I am on a sleep schedule (and yes, this means that I have an alert on my phone that tells me when it’s bedtime).

I am still learning to meditate.

I breathe deep breaths.

I pray.

I do everything I can to be of service to others. When you focus on the well-being of others, your self-pity disappears as you improve the quality of someone else’s life.

Then I repeat. Instead of allowing my pain to make me bitter, I do my best to appreciate everything I have, no matter how big or small. I will focus on the good in my life and let that be my medicine.

2. You endured incredibly trying times prior to your motorcycle accident, including parental divorce and sexual abuse. How has maturity and resilience helped you since your accident?

I learned from a young age to “cowgirl up” because at the time, there was no alternative. Dwelling on why reality wasn’t prettier wouldn’t have done a thing for me. It would have crippled me then, preventing me from achieving everything I wanted to and crippled me years later when I was actually crippled, preventing me from choosing nothing less than recovery. As weird as it may be to say this, I believe the pain and isolation I felt in those difficult times as a child were an ironic blessing of sorts. When you know from an early age that you’re on your own and can rely only and entirely on yourself, it’s as liberating as it is sad. But if you can take the sadness and self-pity out of it, then what you’re left with is a liberating sense of freedom—and, when trauma strikes, you don’t waste any time looking for someone to bail you out.

3. How and why did you choose to ignore and defy the doctor who abruptly told you that you would never function normally within society, not walk again?

Call it my stubbornness or my love of a good challenge or being in complete denial, but I wanted, more than anything, to chase after my daughter like a mother should and be free to do the things that make my heart sing, like hiking and exercise. Just because my body was “broken” on the outside, I was still the determined athlete on the inside. I learned to truly listen to my body and to be the healthiest I could be, despite my circumstances. We may not get to control what happens to us, but we can control how we react to it. So, getting on with my life was a series of three steps up (to the degree that I could take steps) and six steps back, both physically and emotionally. Every one of my surgeries, that totaled 34, I viewed as bumps in the road. I couldn’t think of them as anything but that. If I had, I would have given up. And nothing, not even a doctor’s advice, could get me to do that. Although I love my doctors, I had to think for myself when it came to my own health and happiness.

4. Understandably, you experienced severe depression following your accident. What was the turning point for you?  And how do you find strength and energy to turn such despair into positivity?

Somewhere in between surgeries number 28 and 34, I mentally spiraled into a deep, dark depression. I could feel myself giving up and giving in to the pain, and in that moment, I thought about my beautiful children, my family, my friends, and my clients, and realized I had better make a decision. I could go down the road of despair or down the road of peace and happiness. I immediately threw myself into a place of gratitude for all I did have in my life. Every time a negative thought crept into my mind, I replaced it with something I was grateful for. I threw myself into physical therapy and stayed active with my fitness clientele. Even though I couldn’t physically train them at first, I could still create their exercise plans and coach them over the phone. Being of service really took me out of my despair and gave me a sense of purpose and a strong feeling of connection.

5. Complex Regional Pain Syndrome (CRPS) is also often referred to as “the suicide disease” due to the fact so many sufferers take their own lives. How did you overcome the odds and move forward in order to achieve your goals and live life to the fullest?

My heart sank the first time I learned I had what is known as the suicide disease. When I found out I had an incurable disease that would leave me in constant chronic pain, I defaulted to denial; it took me years to accept that I am a woman with a disability. It wasn’t until I completely accepted my disability that I could begin to heal—not only physically, but emotionally and spiritually as well. I focus on what I can do and don’t get caught up in past accomplishments. I celebrate small victories along the way, whether being able to walk up the stairs on my own or walk on the beach with my family. I only look back to see how far I have come. I connect to my higher power every day and pray. Instead of letting my chronic pain detour me from my endeavors, I use it as a tool to connect me with others going through challenges and am reminded that I am not alone on this journey.

6. Throughout the book, you discuss the need for hope, acceptance and gratitude — to be thankful for all you have rather than looking to the past and what you have lost. Do you feel this is the key to getting the most out of life?

At first I was so caught up in my past accomplishments that I couldn’t live fully in the present moment. I went from being a dancer, athlete, and fitness trainer to fighting just to stand upright for a few seconds at a time. I was so embarrassed of my scars and tried to pretend that nothing was wrong with me. Allowing others to see my scars crushed me. Slowly, however, my perspective changed and I took ownership of my story. I then viewed my scars as battles I had won. Instead of looking down at my leg in anguish, I looked at it as a blessing. I still had my legs. Once I embraced my imperfections and learned self-acceptance, I truly began to heal and be comfortable in my own skin.

Without the traumas and heartbreaks of life I wouldn’t be able to serve the way I do now. It’s not about circumstances but about what you decide to do with them. I focus on what I am grateful for and don’t leave any room for self-pity. I make my purpose bigger than my problems.

As Albert Einstein said, “There are only two ways to live your life. One is though nothing is a miracle. The other is though everything is a miracle”. I believe in miracles.

7. Your role as a wellness coach and motivational speaker involves supporting, inspiring and advising others. Why is this so important and how does helping other people through their difficulties benefit you personally?

I wanted more than ever to get back to my passion, which is working with people, but I did wonder who would want to train with me. I felt broken. I trained fitness competitors, boxers, and CHP officers for years—and then I found myself on crutches. I now needed my clients more than they needed me. I needed to get back to work. I needed to give my life purpose above and beyond trying to walk again. Purpose was what would save me mentally, psychologically, spiritually—and, for that matter, physically. Purpose was what would get me on my feet and, someday—as I prayed—running again. I did whatever I could to get myself stronger—and then came the miracle. Business began booming, and did so quickly because people saw me in the gym, in my wheelchair or on crutches, even pushing myself from station to station in a wheelchair. I became the trainer of encouragement who told people, Yes you can! and that was how I trained them. Speaking to groups of people, whether a gathering of youth or  business professionals, about overcoming obstacles is a way of connecting, and when people connect, magic happens. I believe we need to lift others up to be better ourselves.

8. What do you hope readers will take away from reading your book?

What I have learned in life is a series of choices we make regardless of our circumstances. I could either make the choice to give up and let my life be determined by my circumstances, or fight to create something positive out of my situation. My choice is to notice the gifts life offers, which are particularly plentiful when you look for them. I believe in seeing the good in every situation and learning something from it.

I believe we can have the life we have always imagined, even if our circumstances have narrowed our possibilities. My sincere wish is that my story will help each reader claim their own power and belief in themselves and their dreams, and find their own resilience to move forward and choose a life filled with laughter and love, even when things don’t go as planned. We can’t choose what life throws our way, but we can choose to be happy and live a full life, despite our circumstances. Through our trials, we can embrace our challenges, connect to our innermost resilience, and change our perspective on life. We are all strong, but together we are unstoppable!


I’d like to thank Amberly Lago for taking the time to answer my questions so considerately.

Please visit her website to learn more about her life and work as a motivational speaker.

TRUE GRIT AND GRACE: Turning Tragedy Into Triumph by Amberly Lago (Morgan James Publishing; April 17, 2018) – Available to buy now from Amazon.

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Life Update | Hospital Admissions & Disability

Thursday 8th March marked International Women’s Day 2018. For me, it was spent in hospital (Russells Hall, Dudley) undergoing minor surgery. Could be worse, I suppose!

Due to the fact I have Ullrich congenital muscular dystrophy (a muscle-wasting condition), people are often horrified when I tell them how many general anaesthetics I’ve endured throughout my life (at least 10 – honestly, I’ve lost count!).

Although it is obviously best avoided, I’ve personally never encountered any problems or complications as a result of general anaesthesia.

I’m a big believer in knowing your own body and what you, as an individual, are able to withstand. When undergoing any form of surgery, communication is key – particularly when you have a disability.


A Few Tips:

Go prepared: Take all relevant documentation to your pre-operative assessment(s), including names and contacts for all the medical professionals you see regularly.

Meet with your surgeon(s) and anaesthetist: It is not always common practice to see your anaesthetist prior to surgery, but in my case it is essential. Explain your specific requirements and concerns, and don’t be afraid to ask questions.

Ensure everything is in place prior to your admission date: If, for example, you use a Bi-pap or C-pap machine (non-invasive ventilation), tell your medical team – nurses included. Make sure they know your settings and have your NIV machine ready for you to use post-operative.


I usually discharge myself on the day of surgery or, as soon as I know I’m well enough to manage at home (again, I hear you gasp). Anyone with a disability who has spent time as an inpatient will appreciate why I prefer to escape as soon as physically possible.

Don’t get me wrong – I cannot fault the care and conscientiousness of the doctors and nurses. I am a big supporter of the NHS and frankly, I would not be here today without it.

However, the sad fact is, hospitals in the UK are not equipped for those of us with disabilities and complex care needs. Trust me – having been admitted many times, to various hospitals, for various reasons – I am well versed!

On this particular occasion, it was necessary for me to stay in hospital overnight. My Mom was with me all day but went home at around 7pm when it became apparent that I was unfit to leave. This essentially left me alone and stranded in bed (one that didn’t work!), unable to move, reach or sit myself up.

I couldn’t and wouldn’t expect Mom to stay with me all night, in order to assist with my physical care needs. She herself has recently had a full knee replacement and was exhausted.

After a long, uncomfortable night spent clock-watching, I was incredibly relieved when my folks returned at 11am on Friday to take me home. My home is set up for my care needs. Unfortunately, hospitals are not.


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My Search for a New Wheelchair

My Quantum 600 powered wheelchair, which has been my legs for almost 8 years, is gradually falling to pieces. I have patched it up no end with DIY repairs, and attempted to keep it going for as long as possible. But the electrics are now failing and so the chair is becoming unreliable. Consequently, I have no option but to start the search for a replacement.

As the wheelchair-users out there will know, this is never a simple task! It is a BIG decision, not least because wheelchairs are so ridiculously expensive. More so than a new car!

Throughout my life, I have had no choice but to privately fund all my wheelchairs – both manual and powered – since those offered by wheelchair services are wholly inadequate for my needs (and I suspect, most people’s).

So before committing to a purchase, I need to be absolutely certain that the wheelchair I opt for will be the right one for me.


My new wheelchair must:

– Have rise and tilt
– Be as compact as possible for indoor use
– Be durable outdoors as I live rurally


I have an appointment with my local wheelchair services on Friday 16th February. So I’m hoping they will be able to offer some useful advice and guidance, along with a voucher towards the cost.

A representative from Motus Medical has already visited my home to demo two mid-wheel drive (MWD) chairs:

– The Quickie Salsa M2 Mini
– The Quickie Jive M

I found the Quickie Salsa M2 Mini to be an ideal size (the base is only 52cm wide, with a turning circle of 110cm). However, when tested outdoors over gravel and uneven terrain, it did not perform particularly well.

The Quickie Jive M was too large for the contours of my home (overall width 62-66cm). Furthermore, I felt that it didn’t compare well with my current Quantum 600 in terms of outdoor ability.

So that’s two tried, tested and crossed off the list!

I will continue to keep you updated, following Friday’s appointment.

Me in my current Quantum 600 powered wheelchair

Muscular Dystrophy | A Guide for Parents

*Disclaimer* Please be aware, this is in no way an official, definitive guide for parents of children with neuromuscular conditions. Here I offer support and advice along with my personal perspective, having lived with Ullrich congenital muscular dystrophy for 29 years.


About Me

– I am a UK based disability blogger
– I have Ullrich congenital muscular dystrophy
– Born in 1988, I am now 29 years old
– Born with ‘floppiness’ and dislocated hips
– Slow rate of progression: I didn’t start to walk until 19 months old and ‘bum-shuffled’ until then
– I was able to walk short distances, wearing custom-made leg splints, until age 10
– I would fall over a lot as a child
– I could never walk up or down steps or stairs
– I am now completely non-ambulant and use a powered wheelchair
– I have contractures in all joints
– I have a severe ‘S’ shaped scoliosis (curvature of the spine), which has not been surgically corrected
– Over the years, my condition has deteriorated
– As an adult, my primary concern is respiratory-related
– Education: I attended mainstream school, achieved A-Levels and a degree with Honours.


My Advice

I would first like to say, a life with muscular dystrophy need not be an unfulfilled life! Many people with neuromuscular conditions lead full and active lives, whilst pursuing demanding careers.

Though severely disabling, muscular dystrophy is not synonymous with suffering or a poor quality of life.


Diagnosis

It can, of course, be shocking and extremely distressing to learn your child has a muscle-wasting condition. In some cases there may be a family history, whereas for others like me it could be completely unexpected and unfamiliar.

I am the only member of my family with any form of muscle-wasting condition. So when I was initially diagnosed, aged 4, with congenital muscular dystrophy following a muscle biopsy, my parents were venturing into the unknown.

The year was 1992, there was no Internet, no Google, few resources and more to the point – they had never even heard of muscular dystrophy!

It may be helpful to talk to other parents of children with a similar condition. If this is something you think would be beneficial for you, ask your care advisor or neuromuscular consultant who will assist.

If you are not ready to speak to other families, remember this is always an option if you change your mind in the future.


How and when to tell your child

There is no right or wrong answer. Only you can decide what is best for your child. It is also important to consider siblings, as they should be included in any discussions you have as a family. However, I would strongly advise against telling siblings more about the condition than the affected child. Any information you choose to share with your children should be fair and equal, regardless of the gap in age.

When deciding if, when and how to tell your child of their diagnosis, consider:

– Their age
– Their own awareness of their disability                                                                       – Emotional maturity
– Your ability to answer any questions they might have

From a personal perspective, I recommend an open and honest policy from the very beginning.

I cannot recall any formal discussion or disclosure of my condition, whereby my parents sat and explained the ins and outs of it all to me and my older brothers.

I was officially diagnosed with congenital muscular dystrophy at age 4 (specified as Ullrich CMD many years later), but I was always aware of my disability. I recognised that I was different from my peers – I was unable to walk, run and climb steps. I also looked different – I was very thin as a child, I had contractures and scoliosis causing asymmetry of the torso.

My parents told us that I have something called muscular dystrophy, meaning I have much weaker muscles than other children. At that age, this was enough knowledge for me.

For many years, when other children would ask the inevitable question, ‘what’s wrong with you?’
I would simply answer, ‘I’ve got muscular dystrophy so I can’t walk like you’.

Whenever and however you decide to approach this, I would urge you to emphasise above all else that your child is loved and supported by you and your family. Sometimes the comfort of a loving hug from your parents is all the reassurance you want and need.

Ullrich Congenital Muscular Dystrophy

Infancy

Do your research: Unlike when I was a child, these days there are many reliable resources of information. Of course, ask any medical professionals your child is seeing, including consultants, physiotherapists and occupational therapists. However, I will say that not all children with the same form of muscular dystrophy will experience exactly the same symptoms or at the same rate. For this reason, I recommend talking to those directly affected, such as other parents and adults with muscle-wasting conditions who, like me, have a lifetime of experiences to draw from.
Always trust your instincts! As the saying goes, a mother knows best. This has certainly proved true in my case. My mother, noticing my delayed progression as a baby, sought medical help and was told she was an “over-reactive mother”. Thankfully, she persisted and met with a neuromuscular specialist who almost immediately identified my condition.
– Ensure your child receives the Flu vaccine EVERY year, as well as the pneumonia vaccination. You, as primary caregivers, will also be eligible for the Flu vaccine – take it!


Starting School

Some children are diagnosed well before they reach nursery age, whilst others like me, will have already started school when they learn they have a muscle-wasting condition.

– Starting school can be daunting for any child: Being parted from their parents, away from home and surrounded by lots of unfamiliar faces. But for a child with a disability like muscular dystrophy, this transition can be even more challenging.
– Particularly in this day and age, there is no reason why a child with a muscle-wasting condition shouldn’t attend mainstream school. However, you must consider your child as an individual and decide whether or not you feel this would be best for them. Indeed, your child may have a preference. Some would rather attend a school for special educational needs.
– I suggest making several visits to any nurseries or schools you have shortlisted. Check that everywhere is fully accessible. One visit is not enough as we often forget to ask certain questions and fail to spot things on first impressions.
– It is essential to ensure staff are fully aware of your child’s needs and abilities. Meet with the special educational needs co-ordinator (SENCo) well in advance and if possible, meet and introduce your child to their new teacher and *teaching assistant/support worker (*where applicable). This will help them feel more comfortable and confident when their first day of school arrives.
– Ask your child’s physiotherapist and/or occupational therapist to visit the school and meet with staff to share their knowledge and expertise.
– Be positive, be optimistic, be encouraging. BUT don’t make promises you can’t keep: As your child grows and interacts with other children, they will become increasingly aware of their differences. This will inevitably lead to questions. They may ask why they can’t stand, walk or run like their friends. Furthermore, if your child has a progressive form of muscular dystrophy, they may ask you if their symptoms will get worse as they get older.

For instance, I was able to walk short distances until the age of 10. We were never told if I would continue to do so as I grew. Therefore, I would often ask, ‘will I always be able to walk or will I have to use a wheelchair?’

I appreciate why many parents would be reluctant to overshare and reveal what the future may hold in terms of deterioration, in fear of scaring their child. However, I feel strongly that it is important to be honest and unambiguous. If you don’t know the answer, say you don’t know. Don’t try to comfort your child by telling them it will all be okay and things will not get worse. Knowledge and preparation is power!


Teen Years

– For most children with muscular dystrophy, the biggest changes occur during puberty.
– Growth spurts put extra strain on weakening muscles.
– If able to weight-bear, your child could lose this ability resulting in the need for a wheelchair.
– It is likely that your child will accept having to use a wheelchair more than you. Children are very adaptable. From personal experience, I can tell you that using a wheelchair is a great relief compared to exerting all your strength, energy and reserves on standing and walking. A wheelchair offers mobility and freedom. So please keep this in mind.
– Growth also leads to contractures becoming more severe. Regular physiotherapy (ie. stretching) will help maintain flexibility and movement.
– If untreated, spinal curvature (scoliosis) will increase resulting in asymmetry of the torso, a tilted pelvis, pressure sores and discomfort.
– Scoliosis, along with muscle deterioration, impacts on respiratory function. Should your child feel overly tired, nap during the day, or experience regular headaches, particularly on first waking, you must see a specialist respiratory consultant. It might be necessary to introduce noninvasive ventilation nocturnally.
Noninvasive ventilation (NIV) comes in the form of either a CPAP or BiPAP machine (usually the latter).
Bilevel positive airway pressure (BiPAP): a face mask is worn (many different styles are available) and air is delivered from a machine through a tube to support breathing.
– Other respiratory equipment your teenager may benefit from, especially when ill: Nebuliser and cough assist machine (seek advice and information from your respiratory consultant and respiratory physiotherapist).

BiPAP Machine
NIV Face Mask

 


Other Family Members

Some forms of muscular dystrophy are inherited. This can obviously be a concern if relatives are planning families of their own.

A few years ago, my brother and his wife decided they wanted to have children. Because of my condition, he asked his GP to refer them to a genetic counsellor. They took with them a copy of my medical record.

In their case, it was determined that my brother is highly likely to be a carrier, while his wife is highly unlikely. Once pregnant, they were offered a test which involved inserting a needle into the developing embryo to ascertain if the baby would have muscular dystrophy. They decided against this due to the invasive nature.

I’m happy to report they now have a happy and healthy baby boy.


How to cope

As a parent, it is understandable that you will focus all your thoughts and energy into your children. Raising a child with muscular dystrophy brings with it many more challenges and emotional turmoil. This can have a huge affect on you, your health and relationships. It is therefore crucial to take care of yourself too.

Remember, it is okay to cry, scream and shout! There will be times you struggle, lose your patience and indeed you will have to fight your child’s corner in different situations.

It’s good to talk: whether you choose to confide in relatives, friends, fellow parents of disabled children, or healthcare professionals – don’t bottle up your concerns and frustrations. This will ultimately have a negative effect on your wellbeing and your family.

Make time for yourself: ‘what time?!’  – I know, I know. I appreciate that caring for a child with any disability is a full-time job. But you must allow yourself some form of relief. Even if it is just dedicating yourself to an hour or two with friends for coffee each week. You need space. Your child needs space. It will be good for all of you – trust me!


If you have any specific questions, please leave a comment or contact me directly. I am more than happy to talk privately.

If you like this blog post, I would be grateful if you would share so that others may learn from it.

Thank you!

Christmas 2017 | Plans, Decorations & Films…

Christmas Day is now just over two weeks away! How did that happen? This year has gone so fast. I know we all say that every year, but really.

The biggest event of 2017 for me and my family, is the addition of my new baby nephew, who arrived at the end of August. We are a small family – neither of my parents have siblings, and so my brother’s and I have no aunts, uncles or cousins. So, for us a new baby – the first grandchild for my parents – is a big deal!

2017 also marks my first full year as a disability blogger. I have acquired a respectable following on social media (respectable according to my expectations, anyway!) and I hope to reach an even wider audience throughout 2018.

Plans for Christmas

Every year, our small family congregate at my parents house where my Mom cooks the traditional turkey roast. My Nan, who has just turned 91, insists on watching the Queen’s speech and so we all gather around the dining room table after that lovely treat.

As kids, we would open all our presents upon first waking. But now we usually wait until after dinner to open them all together. It’s something to look forward to on Christmas afternoon… apparently!

Every year we have a real Christmas tree – my Mom insists. Having never had an artificial one, I can’t really compare. But I must admit, it is much more traditional and exciting to have a real tree, with the natural scent of pine, the imperfect shape and shedding needles all over the floor. Some people complain about the effort and the mess they make. But to me, that’s all part of the charm and the count-down to Christmas.

Decorations

Here is our real tree, decorated by my folks and I (a team effort), with plenty of colour, lights and an Angel on top!

I also made a wreath to adorn our front door – get me and my creative skills!

   

What do you think of my finished wreath? I hope it’s a pass – I burnt half my fingers off with that bloody glue gun!

Film Recommendations

There are so many great Christmas films to get you in the festive mood (there are also some pretty shocking ones out there too). But where do you start? Some people want comedy, others have kids to consider and therefore need a family friendly option. Some want tradition and then there are those who would like to see something more meaningful and dramatic.

A few of my favourites include Home Alone (1990), The Muppet Christmas Carol (1992), Elf (2003), and The Family Stone (2005).

I’ve tried to cater for everyone here, although obviously we all have our own go-to Christmas movies. For those of you who haven’t seen any of my recommendations, maybe start with Elf which is a charming and cleverly witty family film about Buddy, an elf played by the irrepressible Will Ferrell. A good choice to keep the kids entertained now that school has ended, this non-stop comedy is both sweet and slapstick at times. I’m 29 and I still love this one!

My next choice is another hugely popular family friendly festive film about a young boy mistakenly left home alone when his family fly to Paris for the holidays. Macaulay Culkin was at his prime here, offering a highly entertaining and endearing performance that more than matched his established co-stars (Catherine O’Hara, John Heard and Goodfellas Joe Pesci). With plenty of comedy, capers and action, Home Alone will excite and enchant both young and old.

Who hasn’t seen A Muppet Christmas Carol, seriously? What is there to say about this one. Charles Dickens classic story is invigorated and enhanced by the Muppets unique blend of humour and musicality. With the addition of England’s very own Michael Caine who is perfectly cast as Ebenezer Scrooge, this is a must see come Christmas Eve.

My final suggestion is less well known though possibly my personal favourite of the four mentioned. The Family Stone is a heartfelt comedy-drama about a modern-day ecclectic American family who reunite for the festive period. One for the grown ups, Id advise settling down with a glass of wine to watch this one before bed. I’m not overly sentimental but admittedly this movie always makes me shed a few tears. But don’t be put off, there’s also plenty of laugh out loud moments throughout. The ‘Christmas message’ is, in my opinion, subtly yet effectively delivered. Frankly I could watch this at any time of year since it’s simply a good drama about the trials and tribulations of family life.


Well, that’s it for my Christmas round-up. I hope you enjoyed reading this post. If so, please give it a share!

Here’s hoping you all have a happy and healthy Christmas

Interview | Amin Lakhani: The Dating Coach on Wheels

Are you lacking in confidence and social skills? Do you suffer from low self-esteem, struggle to form meaningful relationships or find dating too nerve-wracking a prospect?

Well, if you haven’t already heard of him, allow me to introduce Amin Lakhani, the Dating Coach on Wheels. With hints, tips, and tailor-made “no bullshit” advice, he could be just the answer you’ve been searching for.

Amin, from Bellevue, Washington, has a progressive form of Muscular Dystrophy called Charcot Marie Tooth Syndrome, which presents in overall weakness, particularly the hands and legs. Now 29 years old, he has been a wheelchair user since the age of 15.

He excelled academically, achieving two Ivy League University degrees within four years, progressing onto a successful career at Microsoft. Nevertheless, the Self-confessed “nerd with poor social skills” felt lonely and insecure, with only a few friends and no dating experience.

Finally, at the age of 23, Amin hired a dating coach whom he worked with for around four years. This enabled him to totally transform himself, his relationships and his life.

He’s popular, makes friends easily, has been on over 40 first dates, enjoyed sex and fallen in love. Now the Dating Coach on Wheels, image consultant and motivational speaker is returning the favour.


1. You became a wheelchair-user at the tough age of fifteen. How did this affect your sense of self and your personal relationships?

I didn’t mind so much at first because I have a huge family and a lot of support. In fact, it was pretty cool because I had this brand new wheelchair and I no longer felt exhausted all the time. Up until that point I could walk a little but I always used elevators and I sort of grabbed hold of the walls and furniture so that I didn’t fall.

But as soon as I started High School I felt different from my peers. I didn’t know anyone else who used a wheelchair, so the fact that I stood-out from the crowd made me really self-conscious. I was lonely, alienated and my relationships became strained because I wanted the impossible: I wanted to get rid of my wheelchair and be the same as everyone else. But of course, that could never happen.

I did have a few school friends but I never had a girlfriend, and was left out of all the usual teen dating etiquette. No girl ever wrote on my locker.

I felt unattractive and thought I had nothing to offer a girl, so I shut myself down. If ever a member of my family asked why I wasn’t dating, I would use the excuse that I was too busy for all that.

2. Where did you get the idea to seek assistance from a dating coach, and why did you choose that route?

I had tried online dating – the likes of ‘OK Cupid’ and ‘Plenty of Fish’. I was really thorough with my research and looked up what I should and shouldn’t be doing. I was enthusiastic and did everything right according to my research. I was, on paper, a catch. Or so I thought. I was a grade-A student, a high-achiever academically, I had a great job at Microsoft. But it just wasn’t working out for me and that made me feel hopeless. I think my downfall was the fact that I tried to hide my disability from my online dating profiles. I never showed pictures of my wheelchair and never mentioned it. I basically listed my achievements but failed to inject any personality or humour. Had I done this I think I would have been met with a more emotional response. Any response.

I look back now and cringe, but there’s nothing wrong with that. Ultimately it led me to search online forums which is where I found the guy who would become my dating coach. I was 23 at the time and he was doing a workshop called, “Conversation Secrets”. It was then that I decided to get his advice.

Amin Lakhani before his makeover

2. You say a turning point for you was being told, by your dating coach, that you will never blend in but that’s okay; rather you should make yourself stand-out from the crowd. Why did this realisation have such an impact on you, and why do you feel disabled people should aim to stand-out rather than fit in?

Yeah, that really did make an impression on me. I learnt that if you don’t like something you should change it. And, if you can’t change it, you should change your opinion of it. It’s true, disabled people are memorable because of their disability. It does make us stand out. But that isn’t a negative thing.

I do think disabled people should embrace their individuality and dress to grab positive attention. People are going to look at you anyway. By nature, humans are curious and we all check each other out – disabled or not. So, make people look at you and remember you for the right reasons. Make them remember your outfit or your style. If you put the effort into your self-image, you look good and feel good about yourself, people wont pity or feel sorry for you because they wont be focused on your disability.

I also learnt, from my dating coach, that being in a wheelchair gives me free rein to talk to any girl in the world. No one is going to slap, punch or snub a guy in a wheelchair, right? So effectively, I could approach any girl I like and just start talking because even if she’s with a guy, he’s unlikely to feel threatened by me. It’s all good practice!

4. You clearly pay a great deal of attention to your appearance – the signature bow tie, a pop of colour and an overall minimalist, classy aesthetic. How did you develop your personal sense of style and why do you feel this is so important?

I believe you attract what you project. So, if you want to attract a punky type of person, it’s probably a good idea to shape your image around that look. I now look completely different from how I used to. I changed how I dress and style myself according to the type of girls I’m attracted to. We all need to embrace our individuality, consider what we wear and how we wear it. If we don’t feel good about our own appearance, it affects our confidence.

Amin Lakhani now!

5. Much emphasis is placed on sex, and for some disabled people this can be a cause for concern. How then would you coach someone whose disability prevents them from participating in the physical act of sex?

Okay, first of all, sex isn’t everything, it’s just a small part of what a relationship is. It’s more important to talk, flirt, connect and feel comfortable in each others company.

With regards to sex itself, I have clients explain their difficulties, circumstances and challenges to me. It’s all about individuality. Every disability is different therefore it’s important to consider everyone’s specific situation.

I have two main points:

Firstly, I ask what the client wants. Do they want someone to support them to participate in sex? Or do they want their partner to support them in the act? Either way, it’s essential to do your research and maybe find out from others with the same physical limitations how they approach sex.

Secondly, you’ve got to make it sound fun and exciting for your partner. Tell them what you want in a flirtatious way and make it sound hot and kinky rather than practical. Remember, you’re giving a gift to this person – to your partner. It’s a hugely intimate thing you’re asking and you’re entrusting your body to them.

6. You have talked candidly about sex and your own personal experiences. Why do you feel it is important to share this in order to help others?

Yeah I think it’s helpful for me to talk about my own experiences with my clients. It enables us to relate to each other. I’ve been through the same struggles myself and so I can identify in a way that an able-bodied dating coach couldn’t.

I offer advice that is sometimes unconventional. For example, I tell people it’s okay to feel like shit when you get rejected or things don’t go to plan. But you’ve then got to keep going, get out there and try again. All experience is beneficial.

7. It’s fair to say your target demographic is men. Why is this? Do you think men struggle more than women with confidence and making themselves attractive to others?

Obviously as a guy myself, I can relate more to men, although I have had more female clients recently. I have a wealth of dating and relationship experience that allows me to relate and identify with male clients especially.

There is definitely a gap for guys. They just don’t know how to get in the drivers seat. Women want them to take control but in order to get their guy to that place, they themselves have to take control. So a lot of the time I’m trying to help guys take charge.

8. Can you please explain your working methods?

As a dating coach I help people build their skills to make themselves more attractive to others. It’s not just about sex and dating, but also forming meaningful relationships and friendships, too.

For the most part I communicate with clients through video calls and we also Email in between. The length of time I spend with a client depends very much on what they want me to help with, and how hard they are willing to work to achieve their goal. I spent up to a year working with one particular guy who is actually able-bodied. He was incredibly reserved in social settings due to a lack of self confidence, and was looking for more than just a few pointers.

9. What is the one question you are asked most frequently, and what advice do you give in response?

Men want to know how to ask a girl out and how they can tell if she likes him. I tell them there’s no way to really know for sure if a girl likes you back. You’ve just got to rip off the band aid and go for it.

Women mostly ask how to find a guy who’s interested in more than just sex. My response is to learn to say no! Take your time and make a guy work for it. Don’t give it up on the first date as it leaves a bad impression. Inevitably the guy would assume you give it up to all guys just as easily, and that’s not what men want ultimately. We love the chase and value what we’ve worked hard for.

10. What are your top dating tips for those who are particularly nervous or lacking in confidence?

It’s okay and totally natural to be nervous. I still get nervous going on a date for the first time. It takes courage and courage leads to nervousness; everyone feels it. You’ve just got to do it. No matter what, you have to try. We all have to go through awkward stages and you will probably look back and cringe at yourself and your failed dates – I know I have. But again, that’s okay.

I also recommend bringing up your disability early on, but in a humorous way. Don’t try to hide it, but at the same time, don’t disclose everything in great detail. You don’t need to be 100% emotionally okay with your own disability. We’re all a little insecure about something. Just put your best foot/wheel forward so you can find the people who prioritise things other than their partners physical abilities. These people are a rare breed, so it will take work (and inevitable heartbreak) to find them.

In terms of date conversation: Pauses, I think, are actually a good, powerful thing. They can be sexual and flirtatious, allowing you to lock eyes and check each other out. I am consciously quiet for extended periods when I go on a date. During these pauses I look my date up and down and make it known that I’m checking her out. This lets her know I like her and will probably make her giggle and flirt in return.

Remember not to talk too much and don’t attempt to fill the silences. It can be exhausting as it’s impossible to process all that verbal information quickly.

Do ask questions, but not just typical introductory questions. Become interested in your date and respond to their answers. If they answer a question very briefly, realise that perhaps they don’t want to talk about that particular topic. Dig deeper into what they do want to talk about and tap into their interests.

11. Do you think there’s a limit to who you’re able to coach, and have you found any of your clients to be especially challenging?

Oh yeah absolutely. It’s all about motivation. If a client isn’t motivated or willing to do what it takes and work hard for it, they won’t get results. At the end of the day, they need to trust me and do what I tell them, no questions asked. I can’t do the hard work for them.

12. Where do you see your career taking you and what more do you hope to achieve?

I’m kind of happy where I am right now. I really just want to help more people.

I enjoy writing but mostly I love making videos, talking and being myself on camera. So, ideally I’d like to be more active on Youtube. There’s something about being recorded that’s more effective than someone reading something I have written. In a video, you’re hearing my voice, seeing my mannerisms and humour. You’re receiving the information exactly how I want you to. You just don’t get that through writing.

I feel like I was born to do the work I do. All of my personal struggles have been for a reason. I now have a sense of purpose and can make an impact in a way that I couldn’t if I were able-bodied. In that way, my disability is beneficial.


I’d like to thank Amin for taking the time to talk with me.

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*This article can also be found on the Disability Horizons website.

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