Residential Living: About people or profit?

Residential Services are good for the disability sector, and they are not going anywhere anytime soon, but does a person receiving funding for their support needs really have an active voice in the decisions that are made?

The majority of Residential Services run under the system that has existed in determining disability supports for a long time now.

Service Providers take a large portion of the persons Supported Living Payment per week, and the Ministry of Health pays the remaining costs that a person has to pay to live in a Residential Service. Continue reading Residential Living: About people or profit?

Assumptions About Disabled People’s Sex Drives & Seeing An Escort

It has been said before, but society in 2016 is highly sexualised.

Young people in particular are often focused on their image and what that means to others. With so many avenues providing instant gratification, including sexual gratification, the disability sector has a long way to go in order to address the general public in a way that will help youth.

There are a lot of assumptions that are made about disability out in public, and like anything, the mainstream idea of disability is either to pity or to portray as inspirational. In terms of sexuality, a lot of people think one or two common things:

  1. Physically disabled people are paralysed, so they can’t feel their intimate areas.
  1. It hurts the physically disabled to have sex, so they don’t.

The assumptions aren’t limited to that however. Perhaps not to the fault of their own, another idea people have is that those living with a disability have far bigger problems in their day-to-day life, so therefore, there is no room for sex.

Everybody has problems, disabled or not, and the question then becomes do people realise the positive therapeutic effects that sex can have for somebody?

If therapeutic,  is it time that disability organisations started taking a harder look at the entire area of sex, intimacy, and how that can be worked for someone living with a disability. Or, is it not up to these organisations to tackle such an area?

Many organisations in the disability sector cringe at the idea of lobbying the government to take a more serious look into how the sex lives for disabled people can be addressed.

One organisation The Real Michael Pulman spoke to said that sex is a personal responsibility, but what happens when a disabled person is so limited that this is not possible? Should it just be forgotten about?

With that said, many organisations do offer help to the people they support in the area of sex.

Advocates have tackled nearly every other aspect of disability and often they’ve done this directly speaking to the community.

Why not sex?

The problem facing anybody trying to advocate for the sexual expression of disabled people is that sex, by its nature, is such a dividing subject. Another problem these advocates face is the disabled people themselves, because research shows, a lot of disabled youth and young adults have a very negative view of themselves and their ability to engage in sex.

Being sexy, in many ways, is being confident in ones self.

What also must be kept in mind that many in the community are parents of disabled children and youth, and often, they won’t go near the subject either.

Yes, disabled people are very vulnerable, but is it not their right to make a decision on how to discover sexual pleasure?

That brings the conversation, very often at least, onto the subject of sex workers.

The sex industry in New Zealand is alive and well, but a lot of people still think that prostitution is still illegal.

For a disabled person, as bad as it may sound to some people, seeing a sex worker is often the only way a sexual experience is possible.

That in itself opens the door to another lot of assumptions.

Depending on where you look, some sex services that are on offer are actually of very high class, are clean and professional, and aren’t riddled with dodgy drug dealings behind the scenes. It would be fair to say that no one wants to lose their virginity to an escort/sex worker, disabled or not, but that doesn’t mean that a person utilising that service should be condemned for doing so.

The Disability Sector Is Ready To Get Sexy

It is easy to think that it is all too much and all too scary to try and advocate for disabled people and their sexuality. It is also scary to talk about it, and in some cases, want to experience sex, whatever that may be for the individual.

Look at society, it is more sexually orientated than ever before, sex is mainstream and it is available at our very fingertips. Anyone tried Tinder?

The disability sector is seriously lacking in this area, but not for the lack of trying. However, the trying is not happening on a regular basis.

It isn’t about putting disability and sex in a bubble, but sooner or later, young people living with a disability will need to accept that, yes, you will require very frank and open discussions to achieve this.

Organisations have tried, to open up these discussions by running workshops and having information days. These attempts by the disability sector to have conversation are not a free ticket to getting laid however.

The reason why workshops and information days haven’t been well attended isn’t an easy question to try and answer. They have a danger of bringing on more frustration, but it is a start at least.

However, there is no doubting that disability organisations in New Zealand could be doing more, but those who have tried to broach the subject of sex have been met with disappointment.

This is not down to disabled people having no desire for sex.

Would it be fair to say that a lot of disabled people, especially those with very high-care needs, have adopted a thinking that doesn’t help the cause?

That thinking is that sexual experience is in the too hard basket, and this is where organisations and advocates need to sit down together and have very open conversations.

How do you remove the mindset of sex being in that too hard basket?

The bigger picture is key. It is more than just the act of sex, many physically disabled people cannot have penetrative sex and instead will rely on experimentation in the bedroom. The use of sex toys to reach pleasure is one thing, but out of all the discussions that have been had about the “ins and outs” of sex for disabled people, it hasn’t been stated enough that each disabled person is different and will have certain requirements and assistance in order to achieve something close to a normal sex life.

It isn’t a question of resources or interest by the people, it is a question of if those people really want to put themselves out there and try to broach the subject.

Sex shouldn’t be so taboo for the disability community, but at the same time, it is up to that same community to help those who are trying to make a difference.

This is done by speaking out.

MDA’s Chief Executive wants to create member discussion about sex

Ronelle Baker believes that the MDA has an important role in providing services and information that normalises sex for disabled people.

The MDA (Muscular Dystrophy Association of New Zealand) has already been involved in a couple of workshop like gatherings that explore sexuality and disability.

Those gatherings weren’t well attended and while the MDA, and others, scratch their head as to why, further training for fieldworkers is on the cards.

Baker, the interim Chief Executive of the MDA, believes that fieldworkers need more competencies in the area of sex and disability.

The long term vision for the MDA is to create peer to peer support, to link people to resources, and to allow confidential and safe conversations to occur so that individuals can explore their sexual thoughts, challenges, and experiences in constructive and therapeutic ways.

The matter of sexuality and disability is yet to be raised with MDA’s National Council.

Under Skin Injection Could Lessen MD Weakness

A new drug could lessen the effects of Duchenne Muscular Dystrophy, but some would say that it does little to help those who are already suffering the worst.

The drug, called Drisapersen, is a potential first treatment for Duchenne Muscular Dystrophy that targets an underlying cause of the condition. Pending approval by the U.S. Food and Drug Administration (FDA), the final decision over wether to release the drug onto the market has to be made by the end of December, two days after Christmas to be exact.

An advisory committee will review the drug prior to the FDA making their official decision.

Disapersen, applied via an under skin injection, will not cure Muscular Dystrophy but could potentially lessen the muscle weakness and atrophy caused by the condition.

This does little to help those who are already sick and potentially on their death bed due to the condition, but it is certainly a step in the right direction.

 

MDA’s National Council must be more transparent

National Council faces a tough task in providing clear transparency in their statement to staff and members regarding Chris Higgins’ resignation.

As of today, no official announcement has been made publicly to inform members of Chris Higgins resigning from his role of MDA Chief Executive.

Higgins resigned on Monday this week – according to sources.

One reason behind a delay in official communication from MDA’s National Council is due to lack of transparency and acknowledgement surrounding the circumstances that led to Higgins’ resignation.

National Council will find it difficult to present an official statement to members that will avoid potential repercussions about the state of the organisation and the ethics of council members who make day-to-day decisions about the running of the MDA.

The Real Michael Pulman contacted council chairperson Heather Browning earlier today to clarify if and when a statement would be made and is yet to receive a response.

It is likely that Chris Higgins and National Council are working together this week to pen a statement that prevents damages.

Clearly, Higgins opting to resign from the MDA is a result of the increasing questions about his leadership and the financial difficulties that the association is facing, and this is something that many are calling National Council to acknowledge in any statement that is released.

Ronelle Baker is set to become interim CEO of the MDA.

Is National Council’s response to a member acceptable?

MDA head Chris Higgins passed on concerns written to his email address to National Council leader Heather Browning.

The MDA hasn’t yet responded to public comments made by Canterbury branch chairperson Paul Arthur on social media.

Arthur claimed that MDA leader Chris Higgins is “impossible” to work with and went on to express concern over the financial problems the association has been infamous for.

In an email leaked to The Real Michael Pulman, national council chairperson Heather Browning claims that an investigation was launched by Chris Higgins into the Wellington branch office manager who forwarded an email using the private member database written by Liz Mills electioneering for the selection of Browning for NC.

In the email, Browning says that the investigation is now complete.

“The Wellington Branch Chair and the Office Manager both recognise their respective errors in judgement,” Browning said.

Chris Higgins was approached originally for clarification and comment by a member of the association, and the members concerns were passed on to National Council by Higgins who made no comment on the scandal.

Voting numbers for Heather Browning’s election have still not been released by the MDA.

It is also understood that RSM Hayes were only newly selected as the auditors for the MDA.

My Journey To Sex: Part 2

Even today, I don’t know why being able to perform sexually meant so much to me. All I knew was, if I couldn’t, I would be heartbroken but somehow would have to find a way of dealing with it. It was hard to not think negatively, but I just tried to hold onto hope that everything would work out.

I may be disabled, but I was damn sure that it wasn’t going to motivate me to shy away from this goal.

I was fortunate enough to have a few days notice before my first sexual experience occurred. It gave me time to think, and while thinking may sometimes not be the way you want to go into something like sex, it did me a world of good in the end.

As I said in the last blog, sex was something I had desired for so many reasons but all those reasons I couldn’t explain or justify to anyone, including myself.

handicapped-sex-brothel-wheelchair

The first reason was to experience sex. The second, to know if I could or not, and the third reason was the biggie, to achieve something that so many of my friends with either MD or SMA had passed away without ever attempting or knowing if they could or not. This was the hardest justification of them all, because a handful of them had almost given up on sex, or at least that is the vibe I got from them when they were still alive.

It was a myriad of reasons, reasons I couldn’t justify to anyone, including myself as well sometimes… most of the time… all the time.

I had the best part of a week’s notice before my first sexual encounter, so I had time to prepare my mind for the event. Much time that week was spent on my own, deep in thought, as I had been in the sexual sense since the journey began all those years ago. I never talked to anyone about my fears, and the week of losing my virginity, I kept the nerves as much to myself as I could.

The few people around me who knew of the pending event were well aware of just how nervous I was becoming.

It was a nervous excitement, a fear of the unknown, and a worry that after all this time and all this toil, including the decision to finally take a leap of faith and do it, sex may not be all I imagined it to be. I was worried that I would go through all these years of wonder, only to be disappointed.

“Ok, maybe I will be able to perform in the bedroom, maybe I will orgasm, but what if it just isn’t that good?”.

I can hear those words in my head like it was yesterday.

I think you could easily put sex up on a massive pedestal, thinking it will be something out of this world. I think everybody who hasn’t experienced is in danger of doing that, some will have realistic expectations while others will be a little more out there in what they think will happen when the clothes come off.

I was in both camps, and on reflection I think most of my thoughts about intercourse and how it would be and feel were fairly realistic.

I mean jeez, I had enough time to think about it that’s for sure!

My disability and how it works is restrictive. Physically, I probably have the ability of a baby. My arms are weak, I can’t move my legs, I can’t move my hips, I can’t even reach my private areas.

A lot of people who are in the know wonder why I don’t masturbate, the reason why is because I can’t. I have never masturbated, never had any pleasure from my own hands. I don’t have the arm power or the hand power. The man zone is just not a place where my hands go. They never went there.

My point?

Everything about sex was so unknown, and the week’s preparation was so vital in me coming to terms with all that. There were countless times when I wondered what I would actually be able to do in the bedroom. I questioned if I would be able to get her off and make her feel as amazing as she was going to make me, I wondered if it would hurt when it came to penetration, I was worried that I would not be able to get an erection, I was worried I would break my hips, I wasn’t sure if I would know if I was doing the job right. The list just went on and on and on, there were so many reasons to back out of the whole thing, to save the potentially damaging results to my mental state if things didn’t work, but so many reasons to bite the bullet and try as well.

I ended up having a coffee with the girl I lost my virginity too a few days out from the event.

It was so crucial for me to trust her, and also for her to know what my limitations were and would be once we got to the bedroom. We had a good few conversations about it all. She really was amazing at calming me down, and it was quite easy to trust her in the end. She was experienced, and while someone who had been around the block a few times wasn’t how I always imagined my first time girl would be, it benefited me ten fold. I needed a girl who knew what she was doing.

I was scared because I wondered if my reliance on her would scare her away, despite all her experience, I was worried that she would back out because she thought she’d hurt me, and I just wanted the whole thing to fly off without a hitch.

But in order for it to be a success I had to put myself in a position that could have easily taken the whole thing away. I am VERY, VERY proud of the courage I showed in that conversation with her in particular.

Casual sex, or picking up girl in a bar and bringing her back to my house wont ever be an option for me if sex was going to occur just randomly out of the blue, because there will always need to be some sort of discussion about how things have to work in order for sex to be a success for myself and the girl. Like most things with the disability, my sex life also requires pretty much total 100% reliance on somebody else. Getting ready before hand, during sex, and after sex too, it is all pretty much out of my control and I have to rely on the help of somebody else.

But through all the worry, it was such an exciting time too!

That was the longest, but in many ways most enjoyable week of my life. The days just dragged on and on and I couldn’t settle myself down. If anything I was getting more excited and I wanted to forget my worry and just soak up the whole experience. Whilst asking myself if I could move on and live my life if I couldn’t perform sexually, I also tried to ask myself what I would do with my life if I could have awesomely amazing sex. I didn’t come up with any answers to both those questions, but I just knew that either way, I wouldn’t regret what I was about to do.

The other lingering factor in the back of my head was if this whole thing was “right” or not.

I guess I am a little old school, but sex should be a good thing and it should be with the right girl. Plus, virginity is special, and it shouldn’t be taken too easily. Just keep that in mind. I don’t have any regrets, but lets just say I worried that I would have had massive regrets if it didn’t turn out like I hoped.

Two things to keep in mind.

Be prepared to accept that you may not be able to have full on sex, but also be confident or positive enough to believe that you will.

And so… D Day arrived.

The sun came out bright and early on Wednesday January 15th 2014, and I knew that no matter the outcome, this day would be remembered for the rest of my life. I remember the first thing I did that morning. I got up, had breakfast, and went outside listening to music on my iPod. Nothing was done differently than any other day.

As the morning wore on, and the time till my first sexual experience drew closer and closer, I was feeling more and more excited. I took a shower, and that’s when it hit me.

Out of nowhere, an amazing sense of worry threw itself over me. It was one of the most exciting, but terrifying feelings I have ever had. I don’t know why, I think I was just scared that sex, something I so yearned for to settle a question I had been having with myself for years, just wouldn’t be something I could do. My disability, like it has for all of us, had taken so much of my physical capabilities away from me, I didn’t want my dream of sex to be taken away too, because I knew what it would do to me if it did.

It was all so important to me.

But I had to go through with it, worry be damned, self belief and hope shone on through and before I knew it, the time had come and it was about to get a whole lot more real very, very quickly.

You cannot describe that level of adrenaline, my heart was beating quicker than it ever had before, and my panic buttons were being pushed in every direction possible. All the pep talks and advice were ringing loud and clear in my head, and all the ways I had imagined sex would be were racing through my mind like a silent movie, a montage of pictures, what felt like a lifetime of questions and second guessing about to be answered.

Before I knew it, I was having sex. I was no longer a virgin, and everything had worked out well.

Regards,

Mike

My Journey To Sex: Part 1

January 15th 2014 will be a day that I will never forget.

Throughout my life there have been many moments that will be fondly remembered, but losing my virginity, in what I think was a good experience, ranks right up near the top of the list, and for so many reasons.

Before I had experienced intercourse, I was always a very sexual person I think. I say this without any evidence, but it didn’t take much to get my mind going down that path, guess I was easy to seduce. Isn’t every male a little easy to seduce? I was no different. Still aren’t.

handicapped-sex-brothel-wheelchair

The opportunities for physical experiences were nil, but in my mind I had been thinking about what sex would be like for years and years. At the age of 12 I began to get interested in sex for the first time, and I think like many kids at that age, my eyes were first opened to the whole thing when we had sex education classes at school. But back then I was more interested in the company of girls, I didn’t care less about sex because I didn’t even know the mechanics of it. Getting a girlfriend was a big goal of mine, but I didn’t really understand what a girlfriend would be, it was more a friendship based thing I suppose because at that young age you simply are not ready for a proper relationship, chances are you don’t know what a relationship really is.

My journey to sex began so long ago now that it feels like ancient history. It is a history I know every single detail of and could list every major milestone off the top of my head.

For anybody, going through the teenage years was brutally tough for me in the sexual sense. It was tough for many reasons, but a big one was the dawning of sexual curiosity, and the beginning of what felt like sexual abandonment. I don’t want to generalise modern society, because there are some good level headed teenagers out there, but in today’s world, sexual experiences are occurring at younger ages. By the time I was 17, I think nearly all my friends had experienced sex in some form. Throughout the teen years I spoke with a few different specialists and doctors about my sexual concerns, and most people were helpful, but as it had always been for me, there was always something a little taboo about sex in general, and that made my frustration all the more worse.

It was an elephant in the room at MDA too, but an issue that was effecting so many young people with these muscle conditions, but no one really wanted to address it. Sex is so taboo, mainly because it can be a very controversial and uncomfortable topic.

The frustration was deep rooted, for the most part I tried to rise above it, but as the disability slowly started to take more of a powerful effect on my body, the fear was beginning to creep in.

If the disability is making my body so restricted, then surely my sexual capabilities will be affected too. I don’t think, as a guy who was very sexually minded, I could explain to anybody reading this how scared I was. I was terrified that I would never experience. Utterly terrified. I couldn’t talk about it because if I did I would cry.

There were no clear answers, I didn’t know for sure if I would ever be able to achieve sexual gratification, it was just the way things were. Over time I began to wonder if it would ever happen. Deep down I knew it would, but I also knew that potentially, sex would be something that I would have to make happen for myself.

But how do you make something as amazing, important, needed, natural, complicated, impactful, and enjoyable as sex come to you before its ready to happen?

It felt like sex would happen for me when it was ready to, but my impatience and growing concern about my sexual capabilities for the present, and into the future, were also completely natural and expected as well. It was always going to be one of my greatest, and most natural challenges.

Like I am today, back then I was always a very passionate person. I kept myself busy, as you do, and the reality that I was a virgin and had never had a single sexual arousal or feeling was difficult to accept, but made easier to deal with by how happy I was in all the other areas of my life. I grew up in a terrific family, with two parents who were supportive, nurturing, understanding, and above all else they kept me on the path of positiveness. With a disability such as this, or any other, positive thought and proactive action is key to keeping the belief alive in the person dealing with the disability, which could easily take over your thinking if you let it. I don’t want to sound like I was always positive, because there were many times when I wasn’t, but for whatever reason why, every day was a new beginning.

I tried to never let the fear that I may not be able to have sex stop me from believing that one day I would.

The root of the frustration was the inner confliction I was having with myself. On the one hand, I wanted to have sex but I didn’t know why I wanted it so badly, maybe it was just because I could say I had done it, as if it was something that would make me feel a little more normal so to speak. But that only aided the inner confliction to grow, because I believed I was just as normal as anybody else and for my entire life that hadn’t changed, even with a disability which in many ways does make you different. The third confliction was that I didn’t want to perceived or thought of to be just another horny teenager, but I couldn’t help but think that I was. So I didn’t talk to anyone about it really, for years I kept my concerns primarily to myself.

Those few years as a teenager where you think you can deal with it all on your own, and honestly sex isn’t always something you should talk about with all in sundry anyway.

I knew for sure, one reason why I wanted to have sex, and it was to know wether I could or couldn’t. But the issue was, I was never going to know the answer until I did it.

* TMI WARNING.

My body was that restricted, that weak. I couldn’t even masturbate. I didn’t know if I could get an erection, I had never even orgasmed before.

So I had no idea whatsoever what I was going to get into, get out of, and if that would effect my life in a terrific way, or a terribly depressing way.

So to end part one of this series of blogs, probably my most personally revealing piece of writing ever, I have this advice.

Before you have sex for the first time, be prepared to live with the real possibility that you may not be able to. I mean not be able to, no sex, no performance, no nothing. That’s what I had to ask myself. Could I live without ever having those experiences. It would have been such a blow to my belief, in myself as a man, and it was so scary to think about, but think about it you have to. I don’t know why it was so important to me, maybe it was because many of my friends with the disability had died without ever experiencing, maybe it was all just a giant over thought on my part, maybe it was fear, I just felt as though I had a set timer ticking away and I needed to act, and act fast.

Fast forward, even days out from my first time doing anything sexual, in the hot awesome summer of 2013/2014, my journey was only just beginning, and I had absolutely no idea just how life changing it would be.

Regards,

Mike