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“What can I try to do to help my pain in the bedroom and make sure my partner stays happy?”

By Lifestyle, Mik Scarlet, The Love Lounge No Comments
“My chronic pain has never been properly diagnosed and i the last few years I have been unable to work because of it. My partner and I have been together for over ten years and had a really strong intimate relationship… until recently. I’ve been unable to enjoy any touch because of my pain recently and I find it hard to get in positions. My partner is understanding but I don’t want him to get frustrated as we are still young people in our early thirties. What can I try to do to help my pain in the bedroom and make sure my partner stays happy?” – Tina, Milton Keynes
Oh boy Tina, do I know how you feel. I also have had chronic pain for most of my adult life (I wrote about it on the Huffington Post recently) and also know how much it can prevent you from feeling sexy, or allow you to enjoy being touched. I can’t tell you any magic bullet, but I would advise you try Mindfulness. My GP sent me to a therapist who trained me in the Mindfulness technique specifically designed to help with chronic pain and it has changed my life. It gives you the ability to cope much better and puts you in charge of the pain.
Before I found the technique, I used to try to build up to sex slowly and this way I found I could get in the mood far easier. Another method might be role play. If you are really in the mood as you are living out a fantasy, pain is much easier to ignore. You might think that you have to do more to make it work, but I would advised you to ask your partner to take charge more, try stuff out and always keep checking that you are OK. That way as you get more intimate, he’s exploring you while you’re in control and both of you feel conformable. That in itself can be a bit of fantasy eh? Pain is a bugger to live with, but trust me you can find a way through and nothing gets rid of pain like a really nice orgasm. Sure not for long, but if you keep them coming then it’s the best pain medication ever. – Mik

“I’m worried I won’t look as smooth rolling around on the dancefloor!”

By Lifestyle, Mik Scarlet, The Love Lounge No Comments

“I was involved in an accident and after a long road of recovery I am now adjusting to life as a wheelchair user. So far, mostly, so good but I do have some worries about the practicalities of my new piece of kit​!

Before the accident I loved nothing more than hitting bars and meeting new people. I’m worried I won’t look as smooth rolling around on the dancefloor!” – Tim, Crawley

Hi Tim. To be honest I found myself looking far cooler once I started dancing in a wheelchair than I ever did on wheels. I have been known to take over a dance floor with my moves, and once even podium danced as a massive rave. I can see no reason why you couldn’t either. That’s not to say that getting back out once you start using a chairs is a bed of roses.
There are always the annoying issues of access, especially the thorny issue of accessible loos when you have had a few, but once you start hitting the nightlife you will find those local haunts that are OK and this becomes a regular. I found that going to a pub or club a lot gave you a chance to explain to the management how they could improve their access even more too.
If I’m honest, I had similar worries when I started my life on wheels, way back in the 1980s, but I soon found the call of a good time out weighed any fears I had. I also discovered that if you “accidentally” clip the foot of someone you fancy with your front caster you have a perfect in, and the offer of a drink to say sorry is rarely refused. Don’t crush their foot as this will never work, but a gentle nudge never failed me. Get out there and see what happens.

“At 28 I started partially losing my sight last year and have increasingly been losing faith that I will find a boyfriend…”

By Disability, Lifestyle, Mik Scarlet, My story, The Love Lounge No Comments
At 28 I started partially losing my sight last year and have increasingly been losing faith that I will find a boyfriend – it was hard enough before! Would you recommend trying to date other people with impairments such as myself? Will able bodied men see me for me? (Pardon the pun..)
Jasmine
Hmm. I really think that it’s what works for you Jasmine. If you might feel safer and at ease with some who also has a visual impairment that why not try it? But not if you feel that’s all you can get, or you are having to choose that route because you are disabled. No one should make do, especially people as amazing as us! I think that the right person will not only not care that you have a disability, they will see how that has made you the perfect person for them. I found that with my wife, and I feel like that about her. She has a big burn scar all down her right side of her body, and when I met her I knew she was perfect for me as she had it on show. So while she doesn’t call herself disabled, I say she is. We have a shared experience of doctors, and of people being real tossers. Trust me, I was shocked to experience how people react to someone with a visible scar. Shocking. But I digress. I really feel that we, as disabled people, can internalise our fears and allow them to get in the way of us finding love. In a way, disability can act a filter stopping the really awful possible relationships getting in the way of the possible good ones. If some one is put off by a disability then they really aren’t right for us, and so hooray. Make way for those who don’t care.
I know this isn’t really much help, but if I was you I’d just get out there, enjoy life and see what life brings. We spend too much time worrying about relationships and dating and what we should be doing is living life. Along the way it’s much more likely to meet people, and those people tend to be the ones who we want to be with, rather than those we feel we might have to stay with. If they are are visually impaired of not won’t really matter, if they are right… they are right! – Mik

“Should I feel guilty since my accident has changed my partners lifestyle…”

By Disability, Lifestyle, Mik Scarlet, The Love Lounge No Comments
My fiancee and I are getting married next summer and since my accident last year, and the fact that I have to use a wheelchair, we haven’t been the most active couple we once were. We were always trekking or mountain biking and I feel this was a big part of her attraction to me. I feel like I am making her live a life she didn’t choose. Should I feel guilty? Tom

 

Hi Tom. It’s one of the elements of becoming disabled that is rarely talked about, the guilt felt for those who are in our lives. Whether it’s wider family or our partners, it’s tough to cope with that feeling that we are now a burden, or that we have made their lives change too. I’ve talked to my wife about this, and although we met after my first spinal injury (yes I’ve had two, so greedy or what) she had to care for me while I was being treated for my second and the surgery that I required. She had to quit her £500/week job and go onto £50/week carer’s allowance, and both of our lives fell apart. But she insisted she had no worries about this at all. SHE LOVED ME! And I expect you are in the same boat. That love doesn’t care about you using a wheelchair, or legs or flying. Your partner loves you, and it’s vital that you remember that. If you let your guilt and worry colour how you treat her, you may create a self fulfilling prophesy.
However, just because you are now one of us wheelie types doesn’t mean the end of your active lifestyle. In fact it might open up a whole new world of outdoor fun to you. There are many wheelchairs on the market that allow you to venture into the outside world, I’ve tried two – the Boma – https://www.youtube.com/watch?v=ayeUCvj4D5Q and the Trekinetic – https://www.youtube.com/watch?v=t0VCTpguiLo and I can promise they are loads of fun. My local sports centre has a climbing wall and does mountain climbing for us wheelchair users, and there are loads of other such sports open to you. The stereotype of a wheelchair user is no longer true mate, we are eating up dangerous and outdoor sports and creating new ones too. Look online and get out there.
But most important, you are no different to the person you were before the accident. You just use a different mechanism for getting around. Sure other bits of your body might work differently too, but you are still you. And your partner loves you. Take that love at face value. Don’t over think it, or let the way society paints disability make you doubt it. Us wheelies are very loveable types and we make great partners. If for no other reason than it’s easy to keep us in bed… just take our chair away!
I wish you loads of luck and happiness. I hope the big day goes well. Now stop worrying and kiss your partner, get on online, get a great all terrain wheelchair and get out there. Hopefully I’ll see you scooting up a mountain somewhere? I’m easy to spot, I’ve got stupid red hair… and my wife hair is bright blue!

 

“I started university in September and I have CP…”

By Disability, Lifestyle, Mik Scarlet, The Love Lounge No Comments
I have just started university this September in Bournemouth. I have CP with limited movement in my hands and slurred speech. I have been getting involved in all the freshers events and enjoyed meeting people. There’s a girl who lives in my block in halls who has been incredibly kind to me and we have struck up a close friendship. I really fancy her and would love something more. Can I tell her this? I’m worried she’s just being nice to me because I’m the disabled kid.
Brendan

 

My advice Brendan is go for it! I remember thinking that people I really fancied were only being nice to me because I was disabled, and I didn’t take the chance. Years later I met them and they were rather cross when I told them how I used to feel, as they felt that way too. It’s too easy to think negatively, but if you don’t take the chance you’ll never know. It’s far worse to regret stuff you didn’t do than the stuff you did! Trust me, as an old duffer I give you this advice from experience. Best bet is to ask her out for a meal, and then slip in a kind of “I know it sounds a bit crap, but I really fancy you. I don’t want to to mess up our friendship, but I also would hate to miss out on this being something more, so I thought I’d ask just in case you fancy me too” kind of thing. If she isn’t into you that way, then you still have a mate, and maybe she can set you up with one of her mates… but she might say “yes, I fancy you too” and off you go. Either way, no one looses… and you might win! Always jump, because no one really wins playing safe!
Also, I learned along the way that just because we are disabled doesn’t make us less fanciable, either as a bit of fun or potential life partners. We are damn great, and anyone who gets us is damn lucky! – Mik

“I’m a single mum and I suffer chronic pain and spinal problems…”

By Emily Yates, Mik Scarlet, The Love Lounge No Comments
 Hello there,I’ve just read an article about your organisation and wondered if you could help me. I’m a single mum and I suffer chronic pain and spinal problems and things are hard. The pains debilitating and I’m very lonely. Is there any service you can offer me, put me in touch with likewise people with disabilities. I’m not sure if this is something you offer.
Kindest regards, Rachael

 

 Hi Rachael, many thanks for writing in to us at the Love Lounge.
Sorry to hear of your struggles, but great that you’ve written in to us, and you’re wanting things to change.
Pain is such a tough thing to deal with, and for us to give advice on, as it really does differ for everyone! If it’s really debilitating and affecting your life so severely, I’d suggest having a chat with your doctor to see if anything else can be done. In terms of getting yourself out there and kicking that loneliness into touch, what really works for several people I know is planning ahead – having dates in the diary to look forward to, and being able to factor in ‘rest days’ or even ‘rest hours’ into your day so that these dates in the diary (hopefully) end up being events you can attend and enjoy without too much pain or worry.  When there isn’t anything huge to look forward to, could your friends come to you instead of meeting you for coffee in town, just so you can socialise and still be in control if pain really strikes?
It’d be great to know more about you – do you use any mobility equipment to get around, and can certain friends or family members be at hand to accompany you on a girly shopping afternoon, or take single mum pressures off you when you need some ‘me’ time, even if that’s relaxing in front of the TV?!
In terms of dating, I’d recommend boosting your confidence a little by taking some lovely photos of yourself, writing up a positive profile about what you enjoy, and trying online dating.  It’ll get conversations going, you can do it from the comfort of your own home and, you never know, these online conversations might turn into dates for your diary! 🙂
If they do, please let me know! There’s lots of equipment out there that can also help with chronic pain in the bedroom….
Wishing you lots of luck,
Emily x

 

Hi Rachel,
I know how you feel, as I experience high levels of pain. It is something that can get in the way of every part of life, especially intimacy. It’s tough to feel sexy when just being touched hurts. However, I must say that sex is also a fantastic method of pain relief, so don’t think that being in pain will stop you from being intimate with someone. I have found that sex alleviates pain, and this can last for some time. Not always but some times.
On the dating front, I must admit I’m way out of touch with dating in today’s world. I’ve been married for ten years, to the woman I’ve been with for twenty. But I have always lived with pain, ever since my spine collapsed and so know how it can make you feel you might not be the catch of the year. Don’t let that thought colour the way you act. The right person will be supportive, but I found along the way to finding the right person that even a few wrong ones are understanding around pain. They might have been wrong for other reasons but most people seem to understand that pain might make you feel off now and then.
The whole online dating scene is alien to me, but if you fancy trying old school dating try finding activities you enjoy. Then when you are doing them socialise and et voila, you may find Mr Right. I met my wife like this, and it allowed us to stay together as we have so much in common. Emily’s advice around building schedules that allow you to recover is vital. It’s how I have built a successful life. I work, or party or whatever, and then I book some time off to recover. I’m writing this from my sofa, after returning from a holiday. I even book time off to recover from holidays! This is the best technique for beginning to get out now and then. Arrange something that you really fancy doing, do it, and then give yourself the time to recover… and never knock yourself for needing this time. Your health is vital and you should never feel bad for needing recovery time. As you go out more, your confidence will grow. Sure they’ll be knock backs, times when the pain wins out, but you will be in control, not the pain.
Another technique I tried which changed my life was mindfulness. This meditation technique sounded far to hippy dippy for me, but as you know sometimes pain can get so bad you’d try anything. It set me free! Ask your GP to see if they run Mindfulness for pain in your area. It allows you to develop a different relationship with your pain and when it gets bad you can use it to lessen it’s impact. Can’t sing it’s praises too highly. Mik.

“I can’t help thinking that any move that is made on me is a bit of a joke or a dare…”

By Emily Yates, Lifestyle, The Love Lounge No Comments

To the Love Lounge,

My name’s Alex, I’m 26 and a wheelchair user.  I’m really lucky – whenever I go out loads of girls come up and chat to me and they’re really interested in me.  I know that I’m reasonably good looking, but I can’t help thinking that any move that is made on me is a bit of a joke or a dare?  It’s always in the back of my mind when someone pretty is chatting to me, and it needs to stop. Please help!

Hi Alex,

What an interesting post, thanks so much for sharing this with us.  The answer to this is simple, but I don’t know whether it will give you the solution you’re looking for.  Basically, society has made us feel that, as disabled people, we are less attractive and our bodies are ‘broken’ – nowehere near sexy or desirable!  It’s a really tough cycle to rebel against, but these girls that are coming up to you obviously think you’re sexy AND desirable!!  The trick is to focus on your assets rather than your wheelchair.  You’ve said it yourself – you’re good looking, I’m sure you can make great conversation and crack a joke or two.  This is so much more important to many people than whether you’re standing or sitting. And even then, if you do get the odd joke or dare approach, who’s attitude needs to change? It certainly isn’t yours 🙂

Best of luck in your journey to love,
Em x

“Will sex hurt with my Cerebral Palsy?”

By Emily Yates, Lifestyle, The Love Lounge No Comments

Dear Emily,

My boyfriend and I have been together for a while now, and it’s time for us to go the next step and have sex. I have cerebral palsy, affecting my arms and legs, and I’m terrified that I don’t know what to do, whether it will hurt, and whether it’ll be good for both of us.  Do you have any advice for me please?

Thanks,
Katie.

Hi Katie,

Thanks so much for writing in.  This is something that is a real worry for many people, and it was for me, too! I also have CP, so can hopefully give you some good advice.  Firstly, it’s great that you and your boyfriend are in a stable relationship and are ready to move to the next stage, but my first bit of advice is that you should talk about what’s going to be your first time.  It shouldn’t be the elephant in the room!! Hopefully chatting about sex and knowing that your boyfriend loves you and won’t ever intend to hurt you or make you feel uncomfortable should put you at ease.  Is your boyfriend disabled too, or able-bodied? Is this also going to be his first time? This will obviously affect how you talk about certain positions and the logisitics of ‘doing it’.  In terms of ‘knowing what to do’, talking frankly to family members really helped me.  I was really honest with my sister, mum and auntie, and spoke to them about my worries.  They all told me about positions and movements that they thought would be the easiest and least painful for me, but to be honest, you and your fella should be comfortable enough with each other to talk through everything and willing to change positions at any moment if they aren’t working out for you.  Communication is the key.  The first time probsbly won’t be red hot fireball passionate sex, but that will come once you’ve found your ‘rhythm’. In terms of pain, the more you relax and communicate, the less it will hurt.  If it does hurt, it’s simple: stop, talk, and try something different.  The worst thing you can do is keep going in the hopes it’ll get better!  If you’re confident and comfortable going into it, I’m sure it’ll be really great for you both.  If it isn’t, you can always try something new next time! Good Luck 🙂

Em x

“How useful can I expect disabled dating sites to be?”

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

Hello Emily,

First of all I think it’s a great campaign as disability and
relationships need to be open with increased awareness. I am 25 with mild
CP I enjoy skiing and going to the gym. I am slightly addicted to spin
classes! I have a small group on friends who all have girlfriends and
are slowly getting married. I have tried a number of speed dating
events including silent dating, blindfolded dating and online dating.
I have been honest about my disability in my profile, and have
received 0 messages I gave wrote about 50 I am not surprised by this.
I am wondering if you have any advice on where to meet women who would
be willing to overlook my slightly different walking gate? I am
finding it hard to accept people’s negative views and narrow
mindedness. I have been tempted to sign up to these dating agencies :
one has been used on the undateables on channel 4. Have you heard any
reviews of there usefulness? I have given up on online dating and the
use of tinder as they are so image focused. I look forward to hearing
from you.
Kind regards,
Peter.

Hi Peter,
Apologies for the delay in replying – this one is tough as, unfortunately, we live in a very image conscious society ESPECIALLY when it comes to dating!!!
Great that you have so many interests and you’re getting yourself out there and doing what you love; that’s half of the battle!  Are you involved in any groups or classes that relate to your skiing or love of fitness? This is often a great way to meet people as there’s a mutual interest to focus on straight away.  What else are you interested in? Travel? Music? Volunteering? These are all great ways to meet people too!  I play wheelchair basketball, and made some amazing friends through that (and even had a couple of relationships….) Have you thought about joining a club near you?
I’m afraid I can’t comment on the usefulness of any particular dating sites, but I will say that you’re much more likely to be successful in your search for love if it is your personality that shines through first, rather than just the way you look/walk.
There’s been many ways that disabled people have played the game of online dating, many have even experimented to see how many responses they get when their disability isn’t photographed or mentioned on their profile at all.  I’m not suggesting you do this, but it is an option!
Maybe online dating just isn’t for you.  And that’s fine! But someone, somewhere will be for you, you’ve just got to keep trying (however tedious and lonely that can seem at times).

Let me know if you want to chat some more; I can even introduce you to your local Wheelchair Basketball team if you’re interested?
Hope this helps, and good luck!
Emily x

 

Jennie Williams

Disability and dating faux pas

By Disability, Lifestyle, The Love Lounge No Comments

My name is Jennie Williams, I am the Director and Founder of user led disability charity Enhance the UK, and ​​I have degenerative hearing loss​. My hearing loss is believed to be linked to a heart condition I have called long QT, which is otherwise​ known as sudden death syndrome.

For communicating, I wear two hearing aids which I rely on a lot. I am also an extremely good lip reader and sign up to​ British ​Sign​ Language (BSL)​ Level Three​. But, really, ​how many people do you know that sign? Within the hearing world, BSL is not much use to me at all.

​People tend to get very confused about what hard of hearing actually means. They tend to associate it with old people, so I often get people saying to me, “oh, yeah, my nan wears a hearing aid, we shout at her. I think she has selected hearing…chuckle chuckle.” I would be a very rich woman if I had a pound for every time I heard that, and yep, I mean ‘heard that’ because I can still hear things.

Sometimes, I can be in a room full of wheelchair users at a conference, for example, and I am the most able bodied person there. I am moving tables and chairs, assisting people to the loo if needed and then speakers will start up on the stage and, all of a sudden, I am the most disabled person in the room.
I normally can’t hear speakers clearly and often in these circumstances, the hearing loop (if they have one) doesn’t work or I can’t understand the BSL interpreter (again if they have one) as they are too fast and BSL is not my first language. So I sit, try really hard to lip read, take a painkiller as I know the dreaded ‘hearing headache’ will come on and try my best to keep up. It is hard work trying to lip read and, believe me, I don’t know any hard of hearing people who have ‘selected hearing.’ It depends on someone’s tone, how tired you are, your tinnitus (ringing in your ears) and how you feel that day.

So​ how do I approach telling people about my​ disability?
​When I am at work, I am very assertive most of the time. I have to be. I am a campaigner and a disability awareness trainer – that’s what I do. I tell people from the off that I am hard of hearing and for them to please look at me when they are speaking to me or to keep their hands away from their mouths. I even tell them when I need an eye break. ​When I am in a social situation, however, things can be very difficult and different for for me.
I tend to just struggle on a lot of the time, laugh when everyone else is laughing, strain to keep up and, even worse still, I apologise. Why is that? I guess I don’t want to embarrass people and make them feel like they are not including me. I often feel like I am being annoying when I keep asking what is being said and, frankly, it becomes boring for me as well. So the answer to the question is not an easy one, it depends on which Jennie you are in the room with.

​A lot of the time when you say to someone, ‘sorry,’ (I always start with a sorry, how very British of me, “Sorry but I am deafened could you turn and face me please,”) that person will more often than not appear to be somewhat embarrassed, say sorry as well and then shuffle around slightly and try to work it all out in their heads. A classic example of Scope’s ‘End the Awkward’ campaign. You see, I don’t seem as though I am hard of hearing, I have a hearing voice as I was born hearing, I am a good lip reader and you can’t see my aids as my hair is in a bob.

Now it is not all bad being hard of hearing. I fear I have painted a very negative picture so far. Would I change my hearing loss and and my disability? The answer is no, not because that is the PC thing to say and I am ‘owning my disability,’ I am saying it because that is how I feel. I believe I have an empathy, understanding and frankly unstoppable passion to support people who have communication impairments.
This is why I started up the charity Enhance the UK and do the work I do. I know so many cool​, talented​, fun people who are ​disabled, and of course some who are not. I truly believe that I would not have Enhance the UK in my life, and all that goes along with it, if I did not have my hearing loss.

So let’s talk about my favourite subject before it gets too deep. Dating!​
​There can be some real​ perks of dating someone​ with ​a​ hearing impairment, we can get you into the theatre for free or cheap, same with the train, and a lot of us can lip read conversations that you were never meant to know about from quite a way off and get all the gossip. Winning!

​Dating someone with hearing loss can be hard and somewhat awkward at times, for all the social reasons I talked about before. Not to mention when you are getting down to things and having a good old snog, the last thing you want is your bloody hearing aids whistling every time the hot man (in my mind he is always hot) puts his fingers through your hair. And then your aids end up flying out of your ears, then the floor and the dog runs in and eats one of them. That is a true story, killed the moment I can tell you.

​Let me tell you about one of my​ favourite, and also most awkward, dates.
​I was single, living in London and looking for a boyfriend, so I did what all single Londoners do – I joined a dating site. I started chatting to this guy who looked cute and we had a bit of banter via email. ​We soon arranged to meet up as I was not one for chatting online for too long. We met on the South Bank and as I walked out the tube, I was greeted by the cute detective that I had been speaking to. He even looked like his photos, result!

We went onto one of the boats on the river and had a drink. We chatted about work as you do. I may or may not have been twisting my hair and trying to make my lips look all pouty and thinking to myself, ‘I really fancy this guy.’ So, I went to take out my lip gloss and out fell both of my hearing aid batteries at the same time. They are really small and so this guy, who I named Gov as he was a detective and I thought it was funny, said to me, “what on earth do they power?” I then explained my hearing loss and he replied by saying, “why do deaf people do this?” Cut to him waving his hands in the air and scrunching his face up with the tongue in his bottom lip making weird groaning sounds. Oh dear.
I was thinking about throwing my drink in his face but that would have been childish, and a waste of a drink, so I explained about British Sign Language and the culture behind it. I don’t think he got it at all but he was embarrassed and didn’t know what to say, so he offered to take me for a ride on his massive motor bike (not a euphemism) around London and then buy me dinner. I am very shallow.

Next favourite subject…sex.
​Sex is great, we all love having sex but it can be a little awkward sometimes if you are hard of hearing and someone is trying to whisper sweet nothings in your ear. You can mishear totally which results in jumping up, turning on the lights and saying, “you want to do what to me?!” Again, true story and I won’t tell you what I thought he was saying to me.

Having sex with someone who is also deaf or hard of hearing can be hilarious. When I was younger I was having a fling with someone who was deaf and we always had to have sex by the door just in case his old’s came in, or we would put towels down​ against the door to try and block it from being opened, but always having one eye open just in case. Real romance.

So, back to the slightly more serious stuff. I started the campaign Undressing Disability three years ago.
I believe that ​having a disability can be a very isolating experience. As well as physical barriers, there is still a huge amount of prejudice towards disability amongst the general public
Undressing Disability is about challenging the misconceptions that create this unbalance and ensuring that better access to sexual health, sexual awareness and sex education is granted to disabled people. We provide a safe place in The Love Lounge for people to write in and discuss their problems and, in short, know they are not alone.

If people want to be sexually active they should be. I think there is this massive misconception that sex workers and disability go hand in hand. In some cases they might, but this should be a choice not the only option that people, men mainly, have. Most people I know and talk to want a loving relationship and want to feel loved and to love. Everyone has the right to have human touch, even if it is not sex as we know it. Any sense of intimacy between two people who care about one another is so important. Even if it’s a one night stand, but it is your choice, that’s also important. Lets face it, most of us have not only slept with people we ‘love.’ We all want to be found attractive and sexual relationships are the most natural thing in the world.

Sadly, Scope’s new research shows that that only 5% of people who aren’t disabled have ever asked out, or been on a date with, a disabled person. Am i surprised by this? No, of course I am not. Am I motivated to keep pushing the campaign until these statistics change? You bet I am.​

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