Interview | Shane Burcaw

Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.

Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.

Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.


1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?

I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.

2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?

My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!

It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.

3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?

Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.

4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?

Both of my memoirs (Laughing at My Nightmare, 2014; Strangers Assume My Girlfriend Is My Nurse, 2019) are about funny experiences I’ve had, from my early school years into adulthood. Strangers is more about society’s flawed perceptions of disability. My children’s book (Not So Different, 2017) answers the most common questions that kids ask about my disability and my wheelchair.

5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?

Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”

I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!

6. Has your attitude to disability, your own in particular, changed over time?

Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.

7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.

Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.


I would like to thank Shane for taking the time answer my questions.

I hope you enjoyed reading this interview.


Twitter: @LAMNightmare

Website: Laughing At My Nightmare

YouTube: Squirmy and Grubs

Instagram: @shaneburcaw

Interview | ‘The Undateables’ Steve Carruthers

“It is a life-changing experience.        Embrace it!”


The Undateables is a Channel 4 TV show featuring people with a variety of disabilities, all of whom are looking for love.

Steve Carruthers, who has Crouzon syndrome (a genetic condition affecting the shape of the face and head), was a participant on series two, back in 2013. Though romance did not blossom with his date, the experience gave him much needed confidence.

Following his appearance, Steve – now 36, from Manchester – soon met the love of his life Vicky, through social media. Vicky had in fact seen Steve on the show and decided to contact him.

The Undateables screened Steve’s romantic proposal and the couple later married in 2015.

1. Steve, why did you apply to The Undateables and, what reservations did you have?

I initially applied for a different show called ‘Beauty and the Beast: The Ugly Face of Prejudice’. As a result, I was approached to appear on series one of ‘The Undateables’, but I declined as it had never been on TV and I didn’t get the gist of the show. After series one ended, I was approached again but this time it was by my good friend Adam Pearson, who worked with the team to find participants for the show. He convinced me to give it a chance as he said it would help me with my confidence and outlook as I had a negative outlook on life after the loss of two of my siblings. I was a bit reserved and concerned that after being on the show, more people would make fun of my appearance. But, in doing the show, my outlook changed to a positive one and allowed me to help other people in a similar position.

2. How were you treated throughout the production process?

The whole team was incredibly nice, supportive and understanding. Everything was treated with care and compassion.

3. What response have you received following your appearances?

Like all things with TV, there are negative people who see disability as something to mock and joke about. But the positives outweighed the negatives in a huge way. People are so kind and understanding. I found that it [the show] helped educate people about disability. It also helps with how we perceive ourselves and how society perceives us to.

4. The show has been accused of being insensitive and exploitative. The title in particular is widely criticised. What do you think?

The show itself really is everything you see (believe it or not). It is exactly how dates are in real life – you have moments of silence, awkwardness and moments of hope. The show’s titles show cupid shooting the [prefix] ‘Un’ off, leaving the word ‘dateables’. The point of this is to prove we are all dateable, and that we [disabled people] have the same experiences on dates as everyone else does.

5. What would you say to anyone who is considering applying to the show?

My advice to anyone applying for or appearing on the show is to go into it with an open mind. There will be those who will say [derogatory] things, but overall the positives more than outweigh the negatives. It is a life-changing experience. Embrace it! The positive message you’re putting out there helps others as well as yourself. The show has had a huge impact and gives so many people, like me, much needed confidence. Those who watch the show have gained so much more understanding of different disabilities too.


I’d like to thank Steve for taking the time to speak with me.

You can watch his original appearance on the show here.

Images courtesy of The Undateables and The Sun


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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.

Please do connect with the Dating Coach on Wheels on social media:

Website

Youtube

Instagram

Twitter

Facebook


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

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