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?
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.
Fiction novel ‘Chance for Rain’ shows disability experience for what it is: another version of the human experience
Tricia Downing is recognized as a pioneer in the sport of women’s paratriathlon, and as the first female paraplegic to finish an Iron distance triathlon. She has competed both nationally and internationally and represented the United States in international competition in five different sport disciplines: cycling (as a tandem pilot prior to her 2000 accident), triathlon, duathlon, rowing and Olympic style shooting. She was also a member of Team USA at the 2016 Paralympic Games.
Tricia featured in the Warren Miller documentary, ‘Superior Beings’ and on the lifestyle TV magazine show, ‘Life Moments’. Additionally, she is founder of The Cycle of Hope, a non-profit organization designed for female wheelchair-users to promote health and healing on all levels – mind, body and spirit. Tricia studied Journalism as an undergraduate and holds Masters degrees in both Sports Management and Disability Studies. She currently lives in Denver, Colorado with her husband Steve and two cats, Jack and Charlie.
Love and disability: Do the two actually go together? In the eyes of 32 year-old Rainey May Abbott, the uncertainty runs high. But with a little arm twisting, this paralympic skier embarks on an adventure that takes her completely out of her comfort zone…
Tricia Downing: “Rainey May Abbott came to me one night as I was drifting off to sleep and wouldn’t leave me alone – until I got up and started to write.”
“I never intended to write a fiction novel. My first book, the memoir, ‘Cycle of Hope’, was a feat in itself for me. I never had enough confidence in myself that I could write and publish a book. Fortunately, my expectations were reasonable and I really had only one goal with that book; to share the complete story of my accident with those who attended my motivational speeches and were intrigued enough to want to know more after hearing me speak on stage for an hour.”
“On September 17, 2000 I sustained a spinal cord injury. At the time, I was a competitive cyclist and was out on a training ride with one of my friends when a car turned into our path. My training partner barely missed the car, as I hit it square on. I was launched off my bicycle, landed on my back on the windshield, and fell to the ground. I was paralyzed on impact.”
“I was 31 at the time, and just beginning to get my stride both professionally and personally. The accident turned my life upside down. I had to learn to live life from a wheelchair, use my arms instead of my legs, create a new body image and not only accept myself despite my disability, but to believe others would accept me too.”
“Will anyone actually love me if I have a disability?”
“Fortunately my question was answered only four years after my accident when I met the man who would become my husband. However, I have found through talking to many other women in my position, that this concern is not only real, but seems to be pervasive in the disability community. Is it possible to find love when you don’t fit the mold of the typical woman regarded as beautiful in our society?”
“When I imagined Rainey in my dreams that night, I knew her plight and I could empathize with her fear when it came to relationships. And with that, the story of ‘Chance for Rain’ was born. So too was my desire to see more disabled characters in literature.”
“I think, so often many people with disabilities feel invisible. We aren’t seen on the cover of magazines, in the movies or books. Unless, of course, we’re the tragic character or overly inspirational and defying all odds.”
“My goal with Rainey was to show that she could have a normal existence while embodying a fear that is not unique to women with disabilities. I think at one time or another, every woman has grappled with her body image or desirability. Rainey just happens to have another layer of complexity to her: her life is not as common as the popular culture ideal.”
“I hope my novel will give readers a new perspective on disability, love and relationships as I continue what I hope to be a series of stories featuring characters with different disabilities, navigating the ordinary, complex, and the unknowns of life and love.”
Chance of Rain
Elite athlete Rainey Abbott is an intense competitor, but inside she feels a daunting apprehension about her chances of finding true love. Her life as a downhill skier and race car driver keeps her on the edge, but her love life is stuck in neutral. A tragedy from her past has left her feeling insecure and unlovable.
Now that she’s in her thirties, Rainey’s best friend Natalie insists she take a leap and try online dating. Rainey connects with ‘brian85’ and becomes cautiously hopeful as a natural attraction grows between them. Fearful a face-to-face meeting could ruin the magic, Rainey enlists Natalie to scheme up an encounter between the two whereby Brian is unaware he is meeting his online mystery woman. Rainey is left feeling both guilty about the deception and disappointed by something Brian says.
When they finally meet in earnest, Rainey’s insecurities threaten to derail the blossoming romance. As she struggles with self-acceptance, she reveals the risks we all must take to have a chance for love.
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 us 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 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.
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.
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.
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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My latest article for Disability Horizons showcases my pick of the top 10 disabled FEMALE celebrities. Because, in the wise words of Beyonce, girls run the world!
*Last year, Disability Horizons compiledtheir top 10 disabled celeb’s, including both men and women. To avoid repetition, I have not included any of the women from that previous article.
There is a great deal of ongoing discussion and debate around the inclusion and representation of disabled people within the media. Put simply, there is not enough diversity. Still, in 2017, the vast majority of British ‘celebrities’ are able-bodied.
However, we are seeing the emergence of more and more disabled people on our television screens and in the public eye. But, how many can you name? When contemplating this very question, I realised that most of those who immediately came to mind were male – Stephen Hawking, Warwick Davies, Alex Brooker, Adam Hills, Ade Adepitan and Jonnie Peacock, to name a few.
So what about the ladies?…
Hannah Cockroft MBE
Hannah, who has cerebral palsy, suffered two cardiac arrests within 48 hours of birth, which affected two parts of her brain. She was left with balance, mobility and fine motor impairment.
But this has most certainly not held her back. She is a gold medal-winning Paralympic wheelchair racer and 10 times world champion. In 2012 she became the first Paralympian to break a world record in the London Olympic Stadium for the 100 metres T34.
In 2014 she won the Sport Relief edition of Strictly Come Dancing with professional dancer Pasha Kovalev. That same year she launched 17 Sports Management Limited, a company representing disabled athletes.
Hannah continued her reign of success at the 2016 Paralympics in Rio where she won three gold medals.
The victim of a vicious acid attack in March 2008, Katie has endured more than 250 surgical procedures to date. She suffered full-thickness burns (where both layers of the skin are destroyed) and had to wear a face mask for 23 hours every day. She also swallowed some of the sulphuric acid, damaging her throat, and was blinded in her left eye.
In 2009, the former model shared her horrific ordeal in the Channel 4 documentary Katie: My Beautiful Face. She also established the Katie Piper Charitable Foundation, which supports those with severe burns and disfigurement injuries.
In addition, she is now a successful author, television presenter, magazine columnist and philanthropist. An inspiration to many, Katie married in 2015 and is currently expecting her second child.
Cerrie was born with no right forearm and is severely dyslexic. Since childhood, she has always refused to wear a prosthesis or hide her disability.
An all-round entertainer, Cerrie is an accomplished actress, singer, playwright, children’s author and TV presenter. Between 2002-2008, she appeared in Holby City, Eastenders, Grange Hill, The Bill and Comedy Lab. She then transitioned to presenting, working on The One Show, The Wright Stuff and CBeebies (Jan 2009 – April 2017).
But her first appearance on children’s television was met with controversy. Some claimed that the presence of someone with a physical disability like hers could scare young viewers. In response, Cerrie spoke candidly about her disability and how it’s important that children are exposed to differences, for which she was widely applauded.
She now regularly speaks out in favour of diversity and the inclusion of disabled people in the media. In fact, she recently took part in the Channel 4 documentary Diverse Nation. She’s since reached an even wider audience by presenting all the swimming events for the Channel 4 and the 2012 Paralympics.
Named by The Observer as one of the top 10 children’s presenters of all time, Cerrie has also been declared, by The Guardian, as one of Britain’s 100 most inspirational women.
A supporter of many charities including body-confidence organisation Body Gossip, Cerrie now wants to focus on writing more children’s books and acting.
Critically-acclaimed stand-up comedian Francesca Martinez first became prominent playing Rachel Burns in Grange Hill (1994-8). Since, she has starred in BBC shows Holby City, Doctors and Extras.
But it’s not her acting that she’s most well known for, it’s her comedy. With a self-deprecating sense of humour, Francesca, who has cerebral palsy, describes herself as “wobbly”. In 2000 she became the first female to win the prestigious Daily Telegraph Open Mic Award at the Edinburgh Festival. She was also named one of the 50 funniest acts in British comedy by The Observer.
Also a campaigner and activist, Francesca has organised many charity shows and is a patron of several charities, including Evenbreak, which helps pair disabled people with inclusive employers. She’s also an outspoken opponent of government welfare reform, in 2012 launching the campaign War on Welfare (WOW), which called for an end to disability benefit cuts. She later secured the first parliamentary debate for disabled people by disabled people.
In 2013 she won the Public Affairs Achiever of the Year Award and the following year was named one of Britain’s most influential women.
Her recent sell-out comedy tour was followed by a best-selling book, both titled WHAT THE **** IS NORMAL?! She is currently working on a feature documentary of the same name.
Screen and theatre actress Cherylee was diagnosed with Ehlers-Danlos Syndrome type III (EDS) at the age 23. She has appeared in Doctors, The Bill, Holby City, Emmerdale and Little Britain.
Her most recent role is that of Izzy in Coronation Street, which she has played since 2010, and is the soap’s first disabled character to be played by a disabled actor.
Aside from acting, Cherylee established the Manchester-based youth project TripleC, which aims to make drama accessible to all. She has spoken out about a number of political issues too, including the Conservative cuts to disability benefits and the representation of disability in the media. She also continues to raise awareness of EDS.
Better known as The Governess in the award-winning ITV quiz show The Chase, Anne has a form of autism. In 2005, after watching a documentary about Asperger’s Syndrome and identifying with the symptoms, Anne told her doctors she believes she has the disability. It took two years for her to be officially diagnosed, during which time she lost her job as a proof-reader, due to her inability to multi-task.
Unable to pay her bills, Anne was confronted by bailiffs on New Year’s Day in 2008. She later sought advice and assistance and is to this day in receipt of Disability Living Allowance. Around the same time, her social worker encouraged her to audition for The Chase and even paid her travel costs to get there.
She is now a highly successful television personality and professional quizzer, have participated in Mastermind, Fifteen to One and Brain of Britain. Anne also talks candidly about her life with Asperger’s Syndrome and how it affects her.
Jess, a comedian and public speaker, was diagnosed with the neurological condition Tourette Syndrome in her early twenties, and also uses a wheelchair. She’s most widely recognised for her memorable appearance on Russell Howard’s Good News in October 2015. The interview garnered much attention and has subsequently been viewed more than 600,000 times on Youtube – you can check it out in our article on 10 awesome disability-related videos.
In 2010 she co-founded Touretteshero, a blog that documents what it’s like living with Tourettes, featuring articles and videos. Its first production, Backstage in Biscuit Land (2014), met with critical acclaim. It has since toured nationally and internationally.
She has appeared on various television and radio programs including The Late Late Show, This Morning and Fry’s Planet Word. In 2013 she also delivered a TED talk about the misconceptions of Tourette’s and the creative potential of tics. While admitting her Tourette’s presents challenges and has been met with discrimination, she prefers to “celebrate [its] creativity and humour.”
Jess is an outspoken advocate and campaigner for disabled people’s rights. Her work often draws attention to the environmental and social barriers that prevent inclusion. An opponent of the medical model of disability, Jess insists her Tourette’s is a source of creativity, her wheelchair allows her freedom, and she is disabled not by her body but by the inaccessible environment.
Libby is a Scottish Paralympic champion sprinter, having won gold and broken records. She has a deteriorating condition Stargardt’s macular dystrophy, leaving her with only slight peripheral vision in her left eye. She is registered blind and is an ambassador for the Royal Blind Charity.
She has represented Great Britain in the T12 100m and 200m races at the 2008 Summer Paralympics, and the T11 100m and 200m in 2016 at the Paralympic Games in Rio. She is also the 2012 IPC European Champion and 2013 IPC World Champion.
As if she isn’t busy enough, Libby is also a course tutor and ambassador for Ability Training (ability-training.com), offering accredited disability specific awareness courses for sports coaches and fitness professionals.
Along with her beloved guide dog Hattie, she is helping to educate dog owners on the importance of nutrition and health. Libby raises awareness of the essential part guide dogs play in the lives of those with visual impairment.
She was recently honoured in the 2017 New Year’s honours service when she was appointed MBE for her contribution to sport.
Award winner Sarah, who has Down’s Syndrome, is best known for her role as Lady Pamela Holland in the 2010 BBC TV series Upstairs Downstairs. She has also appeared in Holby City, Call the Midwife and Doctors, as well as various short films, radio dramas, commercials and many theatre productions.
She most recently portrayed Orlando Quine in the BBC series Strike: The Silkworm, based on the books by J.K. Rowling.
She is an ambassador for Mencap and patron of Circus Starr, a performance group that does shows for disabled children. When not acting, she volunteers at her local British Heart Foundation charity shop.
Star of the latest Maltesers advert, Genevieve was born deaf. Having never learned sign language, she lip reads, and is, in fact, a professional lip-reader for different organisations.
She had a major role in the 2010 BBC drama The Silence, and the previous year played a deaf nurse in the Channel 4 comedy, The Amazing Dermot. Following her Bafta and International Emmy Award nominations for The Silence, she went on to act in the BBC3 drama series The Fades, and Shameless on Channel 4.
A freelance disability consultant and public speaker, Genevieve works with the charities Hear the World, Action on Hearing Loss and AFASIC – a charity for children with speech, language and communication difficulties. She also runs courses and workshops for disabled actors.
What do you think of my choices? Who would be in your top 10?
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