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My spina bifida means that my body looks different to everybody else’s…

By Lifestyle, Mik Scarlet, My story, The Love Lounge No Comments

Kelly, Bournemouth – “My spina bifida means that my body looks different to everybody elses. I’m almost too anxious about it now to go clothes shopping and try them on in the changing rooms. How can I get some confidence?”

Mik – To me this issue is one of the biggest that many disabled people have to contend with. However much we might outwardly appear confident, and claim to be proud of our impairments, we live in a society that is obsessed with perfection and let’s face it, we are only human. We cannot help but be influenced by this growing need to be beautiful and perfect, and measure ourselves against the images that fill our media. It is a remarklable person, disabled or not, who is not touched by the dream of being perfect. I know that when I was a teenager, back in the early 80’s, I found myself so sure of my unattractiveness due to my disability that I developed an eating disorder. Even today what I see in the mirror and what I understand everyone else sees is very different. However, I will give you the advice I try to give myself every time I find myself looking at the mirror and seeing a monster, fuck em! You are the most perfect you ever. OK, you may not fit the stereotype of what beauty or perfection is, but who say that is right? Mostly a bunch or fat man who work in the press, or aging women in the fashion industry whose obsession with youth is driven by their fears over the passing of time. Disabled people wear their strength and individuality on the design of their bodies, like an amazing work of art. We challenge society to see what biology can actually achieve, and how robust the human form can be. Don’t let the non-disabled world make you feel less because you do not look like they do. It’s them who should feel inferior. So from now on when you get up, look in that mirror and know you see beauty and perfection. Your own totally individual form that no other person can achieve. Be proud of that, and if anyone dares to challenge it then they can go f**k themselves. As for finding clothes, I always advise find a style that works for you. Fashion is our enemy, as trends change so quickly. Instead experiment with style until you find one that fits.. and stick to it. Sure you can follow fashion, but make sure you model it to suit the style you have created. I used to wear loads of leather, not only as it looked great but because it was hard wearing and made me look like an injured biker. The alternative scene has always been less judgemental that the mainstream crowd and so I found my outrageous clothes allowed me to become part of scene who didn’t seem to care if I was disabled, or sky-blue pink!. So best bet, scan the fashion mags plus books on the history of fashion. Find a look you like and that you think will work, and THEN go shopping. With a look in mind, you are already half way there. And if you find a shop without a changing room, remember the Equality Act demands that they have one. So get shouting…. “I know my rights!” If you need any styling tips, drop me a mail, maybe with a pic or two, and I’ll see if I can help. Believe it or not, I actually studied fashion as a overly trendy new romantic youth so I do know what I’m on about!

I haven’t been on a date in well over a year and am finding it increasingly hard to meet women…

By Lifestyle, Mik Scarlet, My story, The Love Lounge No Comments

Peter, Bath – “I haven’t been on a date in well over a year and am finding it increasingly hard to meet women and get out of the house because of the pain of my early onset osteoporosis. How can I get myself motivated and out the house?”

Mik – Dear Peter, I also know the joys of chronic pain and how debilitating it can be. I have tried everything to fight it, both conventional and alternative, and I might suggest trying Mindfullness. It’s a meditation technique thatmight sound a but hippy dippy, but I have found it really works. Not only as a method of counteracting the pain but also to give you back some feeling of control. That feeling of being the captain of you own ship is the thing that will help with motivation, so it really important to get the ball rolling. Ask your GP or at your pain clinic about Mindfullness and for advice on controlling your pain. If you aren’t being seen by a pain clinic, that must be top of your list. Even before you start out on the road of finding methods of fighting your pain I would suggest allowing yourself to feel down, ill and angry. We always get told to keep your chin up and other such arse, but until you have felt real chronic pain it is difficult to understand. While it can stop you from doing anything, and I know in my past I have spent years lying on my sofa unable to sleep for days wishing I would just pass out to have some release, I would advise you to start small. Little trips out, doing things you really enjoy. Imagine it is like a little baby, trying to learn to walk. You make short trips, not pushing yourself too hard, and then build up to longer and longer ventures into the outside world. It’s a balance between reclaiming your life from your pain and not making it worse. But you will win. If for no other reason that you eventually get used to it. However try to get your medical team to understand how bad the pain is and get them to do something for you, as it can be controlled. I have my daily pain medicine, and then something stronger for break through. With the Mindfullness to help me when it gets really bad or when I know I need to spend days at work, I have a full arsenal to fight and defeat pain. With the right help you can too, and then you control it and not it you. Once you reach this point you will look back to now and see how far you have come. Trust me, it is possible. Good luck, and if you need any more help please get in touch.

My longterm girlfriend and I are separating but she is the only person who knows how to deal with my disability

By Lifestyle, Mik Scarlet, The Love Lounge No Comments

Melissa, London – “My longterm girlfriend and I are separating but she is the only person who knows how to deal with my disability and I have become very reliant on her. I am paralysed from the waist down, a wheelchair user and am scared of facing life without the aid of my partner and the prospect of not meeting somebody so understanding. How can I cope?”

Mik – Hi Melissa, as someone who is also paralysed like you, and who had a very similar experience in my past, I can only say do not be scared. I know that I felt I may never find another love when the relationship in question ended, especially as they supported me so much. However in truth it gave me the push I needed to become truly independent, and so I was able to form better and more fulfilling relationships. I am now happily married to someone who has cared for me during some very dark times, and supports me in my daily life but as I had created an independent life for myself before we got together we both know she helps me through love and not sympathy or any other negative reason. I should also say it is vital you do develop independence as you may open yourself up to bad relationships based on your belief that no one else would assist you. I had one of those, and I was brainwashed to believe that so I ended up being bled dry financially. My advice would be contact social services and work with them to put a fullcare package in place for you. Also use what may seem as a negative time to discover exactly how much you are capable of on your own. I know as I discovered how independent I could be it changed my life. Trust me, it might seem scary right now, but it will get better and you will find that this might be the beginning of a fantastic new chapter in your life.

Can I inject any fun back into our marriage?

By Lifestyle, Mik Scarlet No Comments

“Since having a motor-cycle accident over a year ago where I lost the use of both my legs, my wife has been my full time carer. Our relationship has been put through the ultimate test, but now I want things to go back to how the used to be. Will our bond be able to remain the same? Can I inject any fun back into our marriage?”

Seenan, Torquay
Brittany’s advice…
This is a problem close to my heart, especially at the minute as I am unwell and my wonderful wife is caring for me too. It’s great that you see that this whole period of your lives has been a test that your relationship has passed, and that it’s time to get that spark back as it really shows how well you are both coping with your new impairment.

It’s testament to what a strong relationship you have. I know that it’s always at the back of your mind, whether this new dynamic of lover/carer will put too much strain on your relationship as I’ve been there. But I expect it’s much more a worry for you than your wife. I think if you communicate openly about any worries or issues you can actually build an even stronger bond than you had before your accident.

How to put the fun back into your marriage? Well I’m a big fan of role play. So why not have your wife dress up as a sexy nurse when she’s doing the caring. or a sexy maid? You’ve already got a load of biker gear, so no worries about you dressing up either eh? It’s really a case of whatever floats your boat.

If you find your impairment impacts on your sexual function you might want to read a few articles I have online on subject. These two on the website Ask Miss Alice cover the issue with a few ideas on bringing and maintaining sex after disability – www.missalicegray.com – part 1 and www.missalicegray.com – part 2.

This one for the website Disability Horizons explores a technique for creating orgasmic zones all over your body, which can be a real help if you loose sensation due to an impairment but can also be fun for anyone disabled or not – www.disabilityhorizons.com

My last bit of advice is to go out and find out how great life can be as a wheelchair user. I found that once I learned that I could do anything from my wheels I grew in confidence and that made me sexy. Your wife cares for you because she loves you and together you can rebuild your lives to make your love stronger, better and much sexier.

For one thing you can now have sex in every room of your house without stopping. Sex on Wheels… nothing like it!

I’m profoundly deaf, newly single and ready to hit the dating scene again

By Lifestyle, Mik Scarlet No Comments

“I’m profoundly deaf, newly single and ready to hit the dating scene again. I’ve made an online dating profile but I haven’t mentioned my disability yet. When I start messaging someone, how soon should I bring it up?”

Anonymous, Norwich
Mik’s advice…
Personally I am a big fan of being up front from as early as possible. That might be as my impairment is fairly obvious, being on a wheels, but there are elements of my impairment that are hidden and are fairly important to a relationship so I do know what it’s like to have to worry over the big “when do I tell them?” question.

I have found that being honest and up front is the best policy. Mainly as springing the surprise on a prospective partner later on can throw up issues of trust. I doubt you’re considering waiting until the first date, but I’d mention it sooner rather than later. It’s tricky with online dating as you don’t want to attract weirdos, or put people off. However in my view if someone is put off by disability then you’ve been saved from wasting time on the wrong person.

Be proud of who you are, love yourself and you will meet someone who loves you right back.

I can’t live up to the high physical demands of the gay community

By Andrew Morrison Gurza, Lifestyle No Comments

“I’m not dating anyone and I’m sure part of the reason is the birth defects visible on my left arm and hand, and I don’t think I’m so attractive in the face anyway. I haven’t been out for long and all my friends are straight. I feel I can’t live up to the high physical ideals demanded of me by the gay community. Please tell me everyones not so shallow.”

anonymous, Cardiff

Andrew’s advice…

It is true that the LGBTQ community, particularly MSM, place a lot of value on our physical bodies. When one is physically disabled and queer, you can certainly feel unequal to your queer peer group. I know that having a physical disability and being a wheelchair user myself, my body CANNOT conform to our homo-normative ideals. This is where you have to learn to market your disability.

What is it about you that you think is attractive? What about your disability makes you unique? How can you turn that around to be a positive thing? When you go into gay spaces, you have to project an air of confidence simply because most gay men have little to no exposure with respect to someone with a disability. They are probably unsure of how to approach you. This means that you are the expert – you can teach them how your disability is just another part of who you are, but it is one of the most awesome and sexy parts.

Most importantly, you have to start realising that your disability makes you attractive. It gives you the upper hand, and a view on the world and gay life, that other people don’t have. This is an amazing quality. Your physical differences will never match the gay ideals that we have ascribed to in gay culture, but you can break the mould by offering a different perspective.

I’m a gay man with restricted growth

By Andrew Morrison Gurza, Lifestyle One Comment

“Being a man with restricted growth means I get a lot of attention in gay bars and clubs. However, this isn’t always the positive kind and I’m now looking for a serious relationship. Should I try another method of meeting guys? I’m so used to the gay ‘scene’ I don’t know where to start!”

Adam, Glasgow

Andrew’s advice…

The gay scene can indeed be a daunting one. As a wheelchair user myself, the scene is often inaccessible to me, as the buildings are not equipped for access. However, when I have gone, I either receive no attention or awkward attention – by which I mean people are not quite sure how to react to me. In those instances, I try to just have fun and be myself.
In your quest for a relationship, you may want to try online dating. I know that we all have our qualms about it, but you could at least put yourself out there in a different way. Specifically, online dating allows you in a sense, to market yourself and your disability in the way that you want it to be perceived by others.

I would also suggest going to games nights or discussion night that isn’t directly related to the ‘scene’. This will give the community a chance to get to know you and learn about your disability outside of the overly sexualised scene.

I’m an 18 year old lesbian with cerebral palsy

By Andrew Morrison Gurza, Lifestyle No Comments

“I’m an 18 year old female with cerebral palsy and I’ve known from a young age that I am a lesbian. My parents are currently my full time carers, and I haven’t told them this. They are quite conservative. How shall I break it to them? I hope they can cope with having a gay and disabled daughter.”

Katie, Manchester
Andrew’s advice…
Thank you so much for writing in to me at the Love Lounge. Coming out, is stressful enough as it is, so first I would like to applaud you for taking the first steps to come into your sexuality! Congratulations.
In terms of coming out with a disability this can add even more pressure, because you feel as though you are adding to your perceived burden in their lives. I understand that completely, and when I came out that was one of my biggest fears. Because your parents are your primary care givers right now (I’ll presume that you need them for all your daily activities?), I might suggest waiting until you are in a different care situation, wherein you have the independence. I understand how you might feel like you want to be honest with them RIGHT NOW, but it is always best to come out in an environment where you feel most comfortable.
I certainly empathize with you. Two weeks before I came out, I was just about to turn 16. I had read all the literature and was absolutely petrified that I would be disowned. Finally, my mom asked me: “What’s wrong? Are you gay or something?”. When I said yes, we sat down and had a great heart to heart. So, you may feel safe enough to sit them down and tell them how you feel, rather than wait. They may even surprise you. No matter what you do, please be sure that you feel safe and secure in coming out to them. There is no right time or way to do it. Of course, remember that you being both gay and disabled is not an added burden. It is an added power you have to enlighten people and open their eyes to other possibilities and realities.

I’ve just started seeing this amazing girl

By Emily Yates, Lifestyle No Comments

“I’ve just started seeing an amazing girl in the year above from school. She knows I’m partially blind and it’s never been a big deal. But one of the only places we can hang out is at the cinema which doesn’t have many accessible movies with audio description. I don’t want her to get bored with me! What other fun cheap dates could I take her on?”

Anonymous, London

Brittany’s advice…

Take her to the lakes or the beach, shopping, for a picnic or take out for ice cream.

I live in a group home and I really want a double bed… Help!

By Lifestyle, The Love Lounge 2 Comments

Firstly, is there anyone else in your group home with a double bed?

YES – Go to that person and ask them how they got the double bed, particularly the exact person who approved it. Then go to the person who has the power to approve a double bed and make a note of the resident’s top tips about how they were successful.

But if NO and you are the first person to ask for a double bed, ask the staff who has the power to approve a double bed. Now it is time for some preparation before you meet them.

Next, imagine stepping into the shoes of the general manager of your home and picture that you have a resident asking for a double bed.

Since this is the first time this has happened, imagine the questions they will ask and especially  the things that might make them say yes or no. For example, some questions that spring to my mind: Are they scared a resident could be taken advantage of by a staff member? Is there not enough space in the home as you will need a private room?

Also, does the company that runs the home have any policies on the rights of residents?

Would it help to have someone in the meeting to support you like your best friend or the girlfriend/boyfriend who will be sleeping with you in the double bed? Perhaps they can help you prepare your arguments?

Finally, you should call Enhance the UK as they can give you supporting evidence of residents in care homes with double beds.

Good Luck! With good preparation you might be surprised at how quickly you have a double bed to  Enhance your sex life!

When I was in hospital in my own room and my wife and I asked for some “private time,” it was really easy. They just gave me a “do not disturb” sign and we used a single bed for sex.

I was impressed by how accommodating and not squeamish they were, but not all homes will have the same open attitude soEnhance the UK can advise you on your rights.

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