I have encountered these stigmas and stereotypes all of my adult life, because I have a genetic condition that inhibited normal muscle development. Functionally, I’m a quadriplegic, although unlike someone with a high spinal cord injury, I’m not truly “paralyzed”. I have normal sensation, sexual response, etc. In fact, I am in better health than most 40-year-old men, and most people guess that I’m in my early 30s. Despite this, no matter how dissatisfied they may be with “the average guy”, in passing, most women would not consider me a sexual option. They assume that sexual dysfunction, or worse, sexual desperation and naïveté, go hand in hand with being in a wheelchair. Ironically, I am in almost every other way what our society would consider an alpha male. I’m educated, well groomed, witty, charismatic, cosmopolitan, decisive, and successful as a sole-practicing attorney. I appreciate awareness being drawn to this issue, although so far, I’m the only one commenting here. That says a lot.

Hey Yvonne, you single?

I’ve had a disability, and been confined to a wheelchair, since a very early age. I am now 53 and can say for a fact that most people in able-bodied society feels the disabled are a-sexual, disgusting, and to be avoided.
Although my disability limits my ability to walk, it did not prevent me from getting a good education, and having a very successful career. I have achieved everything, and more, that the average AB has except the relationships, and friends.
It’s bad enough having to deal with the disability, but to be an outcast of society is by far the worse.

Bravo!!!!!! My husband and I are in our 50’s and neither of us are disabled but this article tickled me pink. Please try to share more articles of this caliber. Loved it, loved it, loved it!

Gemma
http://passionwithinmarriage.blogspot.com/

I’m sure you mean well, but you’ve never had to care for a disabled spouse. If you had, you’d know that after wiping butts, dealing with the overflow of colostomy bags, inserting/removing catheters, washing soiled clothing, etc. is a huge turn-off. Also, many, many disabled persons have suffered conditions that radically change their personalities making them virtually unrecognizable to the well spouse — another huge turnoff.

I can sympathize with those who are disabled and who want to have normal lives, but there are limits. If your spouse is also your primary caregiver and nurse, then there’s burnout on top of everything else. Some spouses work full-time and then come home to another full-time job to try to care for a disabled SO. Between the clinical aspects and the exhaustion, physical intimacy is next to impossible.

I’m sorry, but in this case you really do not know what you are talking about.

Thank you for this article. I am a 38 year old male and women don’t even look at me as a possible mate for a relationship or sexual partner. Thinking that I guess a disabled person couldn’t satisfy or please them. Yes, I have a disability that I was born with, but I can do more things in my life that most so called normal people do in their life time. I have gone to college, live by myself, provide for my self with a sucessful career.

Again thank you for this article.

I am not the least bit disabled. I’m an ER nurse. I started dating a wonderful man in Feb of this year. He has been disabled for almost 6 years now. Yes, there are physical issues. What I don’t understand is why it is assumed that there are mental issues as well? His brain works the same as it has all his life. He’s a red blooded male. Put two and two together. Very well written articles.

In response to the post by Bill, I think issues such as overflowing colostomy bags, the insertion and removal of catheters, and soiled clothing are at the extreme end of what we’re talking about here. I also think his comments justify the point of the whole article, because that’s probably something a lot of people assume is associated with being in a wheelchair… incontinence, diapers and exhaustive medical issues. That may be reality for some with the severest of conditions, but it certainly doesn’t mean Dr. Fulbright doesn’t know what she’s talking about. I also think it’s important to note that the article is primarily about not overlooking the disabled population as potential sexual partners. In such an instance, one would be knowingly considering a relationship and the related responsibilities or necessities, rather than dealing with the emotional issues of suddenly having to care for a severely disabled spouse who was once “whole”. Everyone has their limits for what they are comfortable dealing with, but some can handle much more than others, and the suggestion is that one should not make blanket assumptions about the sexuality or sexual potential of individuals with disabilities.

Yvonne, I have a question just for you. What university founded the Kinsey Sex Research Institute?

I also want to point out that when we care for little children, such as infants and toddlers, we wipe their bottoms, clean their soiled clothing and bedding, feed them, bathe them and dress them. We often get peed or vomited on. Despite this, most of their caregivers still want to hold them close, play with them, nuzzle them, kiss them, tickle them, and generally share loving intimacy. Why is it different when the ones we physically care for are all grown up? Is it because as adults we are conditioned to think of loving touch as a commodity?

Bill, I am sorry you have to deal with such extreme issues. However, that is FAR from the norm for most disabled people — even severely disabled people.

Most of us have a relatively normal life. I exercise by pushing my wheelchair several miles per day, wear nice clothes — heck, I even drive a Corvette on the weekends, and own home in the burbs. Most of my friends that are wheelchair bound, are like me, educated, prosperous, and happy with our lives (it’s the AB’s that are unhappy).

You statements though, point out a myth that most AB’s hold about the disabled — unclean (in several ways), mentally retarded, personality problems, needy, etc., etc.. Nothing could be further from the truth.

This article misses the point in one significant way: It is not about sex, it’s is about the relationships that exist long before sex becomes an issue. Most AB’s do not want to step outside of the comfort zone, and in some ways I understand that. That is why I, along with most of my disabled friends, find it necessary to make an extra effort to let strangers know that all is OK.

But, I have to admit life can be difficult in many ways. Just yesterday, I was at our local upscale shopping mall for lunch with a friend that is in a wc also. We were getting on the elevator, and a cute lady runs up to the door to hold it for us. She looks at us with that familiar look of sweetness, and says in her best baby-voice, “Theerreeee Youuuuuu Goooooo”. So you tell me — How do you go from baby-talk, pity, and charity, to sex? Anyone care to offer a suggestion?

Bravo! I have been disabled for 18 years now do to a Motorcycle accident which left me partially paralyzed from a burst fracture at the L 1 level of my spine. I had to learn to walk again. My spinal cord left me with a Sexual dysfunction and other dysfunction of the bowls which I lack at times control of the bowls which means I do have accidents. I also have to catheterize my self to urinate. I have been married now for 12 years and have a child. Before my wife (which I met after my accident) I had at least 4 other sexual partners. I must say that the sex after my accident was much better. This I believe is because I had to learn to communicate with my partner because to look at me you would never think that I have this problem but I do. I would tell them about my accident and how everything works after the accident and I must say the women would find this interesting. I would have to use the injection therapy to gain a erection and I would ask them if they would like to watch. They all but one said yes. I would communicate to them how I would have a premature ejaculation the first time and after I could actually perform on them for quite a long time. The longest I must say was 2 hours! But with my back trouble I was limited to how long I could stay in certain positions. Which after I found out made the sex more exciting because of the differant positions that I would never would have asked to try before my accident. I had to learn how to perform oral sex to perfection because of the injection therapy I was only able to inject myself every 72 hours. I found this was more satisfying to women in some cases more then the actual intercourse. Today I consider myself a expert at oral sex because I actually took the time to ask the women where is it that is the most sensitive for her. ( Remember Communication is the key!!!) This is my experience living with my handicap. Granted I wish it never happened but it did and I just like all of us disabled you have to learn to live and cope with our handicaps because what else are we supposed to do Die?? Not me I thank God everyday I am here and I had a second chance at Life…
Great article!!!!!
Thank you
Thank you
Thank you

Thank you for the article, I couldn’t agree more. Within the last 6 months I met and married a wonderful man who is disabled from his military service but mostly from having diabetes for 20 years. He still works full time, has a wonderful outlook on life and is fun to be with. Ladies, don’t pass up a good man because of a disability! There are ways around it if you just use your imagination and don’t be judgmental. NONE of us is perfect. I don’t think our sex life could get much better. I realize we are newlyweds, but we are also about 50 years old. We find new ways to have some kind of intimacy every day. Mostly, we’re just glad to have each other. To us, everything else is a bonus. By the way, I am not disabled, overweight or ugly. Just an average working American woman who can see past what others don’t or won’t.

I lean more to Bill’s point of view. I have a husband who was my best friend, lover and support for over 30 yrs.
We found out he had kidney problems thru a routine blood test in Nov 2003, He was catheterized due to bladder that wasn’t draining, but everything still worked. Because of his age 51, the urologist decided it was a prostrate problem. He had his prostate microwaved (newest procedure) and within 45 minutes of “killing the prostate” his libido, desire, and performance were gone. 2 wks later be was diagnosed with late stage MS. MRI’s of his brain showed lesions in his right front cortex (he would loose all short term memory, numbers, emotions, ability to make decisions, depth perception, everything that makes you you-list goes on and on within next 6 mos)

He had a supra pubic catheter placed through his abdominal wall directly into bladder for drainage. MS had killed his bladder nerves. I am now married to a man that looks fairly normal to others. He is in a wheelchair due to nueropothy in both feet. He cannot carry on a complete conversation, he doesn’t have the ability to understand jokes, I am living with a total stranger who acts about 9 yrs old.

He has no desire for anything but to hold hands very occasionally–Doctors and illness took that away, and he doesn’t even realize it. He tells me he loves me-much like a child tells a mom. He took all the MS meds available, and from every manufacturer. Steroids, IVIG we have done them all in 5 yrs.

I for one am tired of hearing people “show how they cope” “if he just tried harder” and these quaint little stories about those “who can”. Somebody needs to get real and down in the trenches where the real changes through disease process happens. There are untold numbers of handicapped spouses between 25-60 who are forgotten, or covered up by these “cute little new stories”. You are not looking at the whole picture of these returning soldiers, or the couple next door with health problems. Too bad, both sides of the story can’t be heard.

Right on Bill. After 10+ years of caring for my husband who needs all his ADL’s met. I have bathed him, cleaned up his drool, wash his bottom, front and sides. Listened to him coughing up sputum that is gray and green all the time. His lungs give off a horrible smell of bacteria, which can’t be corrected. Oh sure, I really want to snuggle up to his wheezing body.

I am very sorry for those disabled that are reading this….but this is NOT the far end of the spectrum. There are thousands of spouses caring for this degree of disability or worse.

It is obvious that the good doctors who wrote this article didn’t do much research or they would have known what most of the spousal caregivers really go through.

Perhaps these doctors should have done more research with different types of disabilites.

Maybe they should have spent some time in my house listening to my husband coughing up green and gray sputum. Or washing his underwear when he has an accident from coughing so hard. Or bathing him because for 10 years he hasn’t had the energy to do this for himself.

I do agree that there are some disabilities that may still be able to feel sexy, but let us ask their spousal caregivers how they feel about it.

I can appreciate what the author is trying to say, but it doesn’t tell the whole story. I’m sure people like this exist as proof by the gentleman that have posted.

However, this is one side of things. What Bill has posted is not a myth. It is a reality and not an uncommon one.

The effects that disability and illness can have on a relationship is very real. Certain illnesses take over the household. Day in and day out it is like having an elephant in the middle of the room.

My experience is not with a paraplegic, but an illness that invades every area of my life and my marriage. My child can’t sit on her father’s lap because it is too painful. Everyday we live with the reality that an emergency can happen.

Living day to day with certain illnesses leave some people living with the person that is supposed to be a partner, but ends up being a patient.

And as the mother of a small child and the spouse of a disabled veteran, I can say with 100% certainty that there is no similarity in cleaning my child after an accident and cleaning my husband. I did both with the same devotion. I did both for the same reason…they couldn’t do it themselves. But my daughter couldn’t clean herself because she was little and had not learned to do so, while my husband couldn’t at one point because his spine was cracked in 4 places and other times because he didn’t have enough oxygen stored in his body to do it himself. You can’t compare that to a baby’s mess.

When one person ends up in that predicament in a marriage, a doctor or social worker will typically recommend getting professional help because performing these tasks can affect the marriage bond. Unfortunately everyone can’t afford it. Add to that, personally if my daughter, messed her clothes that way I tossed them. My husband insists his be rinsed in the sink.

And the effect of the illness, injuries, medication has made us roommates…and he stopped touching me first.

There are two sides to this and the whole story needs to be told.

Bill,Awassa,Janie, I see your point of view, and agree, you are all in a tough situation.

However, I feel there are two different types of commenter’s to this article: 1. Those like me that have disabilities (maybe life-long) that are otherwise healthy, and active. 2. Those that are ’sick’ that have caregivers that require high levels personal care.

I believe the article was intended for the people in group “1″. There is a large group of us that have disabilities that are, for the most part, healthy. We are active, educated, and have careers, but, missing a social life, wife/husband/girlfriend/boyfriend because of misconceptions, and stigma.

This article, in an unintended way, points out the BIG problem we in group “1″ face, and that is the belief that we are part of group “2″. People do not see us as possible partners, rather they see soiled diapers, hygiene problems, and stigma.

My body functions in a very normal way. I don’t have any of the issues mentioned above, other that I need a wheelchair to get around. I use a manual wheelchair and am in great shape. But what people see is not what I am.

I know and deeply appreciate what the article writer intended with this article. But as mentioned above, what was uncovered, in an unintended way, is the key.

This story does not differenciate between a group 1 and group 2 did it? I take offense at anyone saying disabled vs. sick. My husband looks just like you Billy. Disabled, MS has left him disabled.

If the author is going to talk about disabled people and sex, then all sides need to be told, and the numbers are out on how many returning soldiers are suffering from POST TRAUMATIC STRESS-that brings in another dynamic.

I personally would like to see this “sexpert” step up and talk about everyone, or make a correction about group 1, group 2, group 3. Sounds pretty silly doesn’t it.

Next time you have the desire to talk about sex as a news article, please get all the facts, from all the sources involved. Some will tell you what you want to hear, some will tell you what they want to believe, and some will out and out lie-when it comes to their sex lives. Think about that for a while.

So, there are 2 communities of disabled people are they? The ones who are competent and capable of living independently and those that require an able body extension just to meet their basic needs.

This may come as a shock to those in the first group, but as aging and progressive disabling conditions take their toll, that first group will end up in the second group. The spouse that married someone in the first group will feel the losses and will no longer have his/her needs met because of all the conditions that Bill spoke about.

The second group is not the “extreme”. It is a progression. Many of those in the second group started out in the first group.

Another comment I would like to leave you with, if you bear with me, please, is that “disabled” does not mean confinement to a wheelchair. I am sick and tired of people needed metal props to understand that the person is disabled. Many carry their disability inwards, like heart issues, lungs, and other organs.

A combination of medications and chronic pain (another invisible issue) leave many unable/unwilling/incapable of having the sexual desire, which leaves their spouses not as a husband/wife, but as a permanently unpaid, unrecognized caregiver.

These husbands/wives have normal, healthy sexual needs that go unmet for years on end because society deems it “their job”, “they knew what they were getting into” (no, they did not, no one really does), “they made their vows: for better or for worse”, etc… Just a bunch of useless platitudes that resolve nothing and continue to perpetuate the invisibility of the spousal caregiver.

I have read through the comments, some are wonderfully explained as “I am in a wheelchair but I am healthier that most 40 yr old men”…. You know what? You are wonderful, you are healthy and you have learned to be independent inspite of your disability. Besides the wheelchair, there is nothing you probably can’t do that an abled body man your age can do….. unless they are walking upright with internal health issues and completely dismissed because they have no visual societal reminders.

Please turn your attention to another type of disability: Brain Injury. The guy/gal walks upright, is physically healthy and you could not tell the difference between these people and a family member… Until you are a fly on the wall and see what goes on behind closed doors: Constant looping of ideas, repetition, flying off the handle over imagined words, or a kid’s toy left on the couch/floor. The verbal abuse suffered by these spouses, the having to walk on eggs 24/7 and train their children to not behave like normal children do, so they can maintain the ill parent’s moods as constant as possible takes a toll on the “healthy” spouse who ages quickly, lives with reletless stress and is providing the physical and financial support for the family.

Sex? Sure! just not with her/him. But first, they would like a year to decompress and regain a sense of what other people call “reality” because theirs is spend socializing with the medical community, monitoring medications and how their chronically ill or permanently disabled spouses are reacting to those.

Many of the healthy spouses have saved the ill spouses lives countless of times. Being in this constant state of emotional rollercoaster is not sexy.

Someome with MS can be in any one of the many stages of this horrendous disease. When they need to be fed, they sleep 12 hours a day, have lost the ability to transfer from wheelchair to commoded… and the spouse is doing all that Bill mentioned and then some more….. that is not sexy.

Many of us have tried to keep our lives as normal as possible, but our levels of normal have nothing to do with the perception of the general population. It is not sexy.

If what this article implies is that as long as nothing is making you change your life style against your will, being disabled can be sexy. But I submit to you that all these degrees of disablility never reach a plateau, they are probgressive and they are pervasive.

Bill knows what he is talking about. Their relationship has progressed to that point.

How about the ones (I know personally) that married a vital, vibrant, funny and wonderful person in a wheelchair that was capable, competent, hard working and whose wheelchairs were overlooked most of the time?…. I have to tell you that no one expected them to progress beyond that level until it happened. From organ failures, to chonic pain, to inability to function without a 24/7 aide.

Not sexy.

All sides of the equation need to be looked at before we start embellishing the reality of folks that are having a very difficult time being seen and heard: The healthy partner of the disabled. Relationships are not static and neither are disabilities.

PEACE

Dear Dr. Fulbright, Thanks for the article. Next time you are in town (Dallas,TX) let me know and you can join a few of us for a beer at the local sports-bar. I suspect you would find the conversation interesting.

Re FOXSexpert: Can Disabled Be Sexy? You Bet! – Thursday, June 05, 2008
By Yvonne K. Fulbright

As President of the <a href=http://wellspouse.org”Well Spouse Association”, a non-profit, 501(c)(3) organization offering peer support to spousal caregivers — husbands, wives or partners of people with chronic illness and/or disability, I would like to comment on this article. Naturally, my point of view is going to be that of the spousal caregiver, but I want to underline that the WSA is not at odds with our members’ ill or disabled spouses – rather we endeavor to support our members in their continuing, long-term efforts to support their spouses. So you can say we aim to restore balance for the couple dealing with a major, life-altering illness in one (or both!).

Ms. Fulbright outlines the following “societal attitudes” held by those in our society who have not been personally touched by a major illness or disability, either in themselves or in a loved one:

1. People with disabilities aren’t sexual beings.
2. People with disabilities are undesirable.
3. Good sex can only be spontaneous.
4. People with disabilities can’t have ‘real’ sex.
5. People with disabilities shouldn’t worry about sex.
6. People with disabilities aren’t sexually adventurous (or if they are, they’re perverted).
7. People with disabilities shouldn’t have sex.

My immediate reaction was that one could just as well substitute “spousal caregivers” for “people with disabilities” in the list above, and the “societal attitudes” would still apply. Most people just don’t want to go there – to imagine how it must be for someone else, or how they themselves would cope in a situation of spousal illness.

The importance of intimacy or the lack of it in a spousal relationship that involves long-term illness and caregiving cannot be minimized. That is why our group exists – otherwise, there would be no need for it, because spousal caregivers would receive the same comfort from general caregiving groups as other family caregivers.

I believe Ms. Fulbright has done a valuable public service in writing about this topic. I think the positive message we all need to underline is that there is a wide range of ability amongst disabled or chronically ill people. She is absolutely right when she says: “If you’re bedridden or need assistance moving around,” — and here I would include the phrase, “or if you’re a spousal caregiver” – “society seems to think that you should be celibate “

Nevertheless I feel she is overstating her case. Many of our members see what a long-term, major illness or disability has done to their ill spouses – causing serious fatigue and a loss of libido. In those cases, it really is impossible, or nearly so, to have any kind of a sex life.

She is correct that for most people with disabilities, these societal attitudes are an obstacle, but surmountable, to a loving relationship and a good sex life – and to support from a spousal caregiver if, later on, more serious illness or disability develops. And I would add, a number of our members married their spouses after the diagnosis of serious chronic illness, or a disabling injury!

Is this really an issue? There are thousands of people out there who not only know that no matter how badly disabled a person’s body may be, the brain is indeed the biggest and most important sexual organ. There are people who even prefer a physically disabled partner, because they believe disabled folks are better lovers.

What astonishes me most about this thread is the vast reservoir of untapped venom that seems to flow from a number of spousal caregivers. I believe Dr. Fitzgerald’s article was meant to be an upbeat examination of some social misconceptions regarding the sexuality of the [physically] disabled, and their viability as sexual partners. I do not think her intent was to overlook or disenfranchise those good people who deal with severe chronic illness, and the associated gross details of tending to someone with advanced MS, Lou Gehrig’s disease, severe cerebral palsy, or anything similar. Unfortunately, for some of those caregivers, their experience is so overwhelming, that it becomes the only possible experience, or as suggested here, the only possible OUTCOME. The reality is that most of us, with or without disability, are going to age and become decrepit, helpless and ill. We will cough up sputum, and wet our beds. For those with certain genetic disabilities, that happens at a younger age, and only fools would argue that it is a burden on the healthy spouse. Dr. Fitzgerald’s article wasn’t about caring for those with severe chronic illness. It wasn’t about people who lack sexual desire because of some medication, dramatic brain injury, or unpleasant symptoms. But seriously, who feels sexy when they have food poisoning or the flu? We can all relate to that! The article wasn’t about that. It’s about the here and now, immediate viability of the thriving [physically] disabled population to be taken seriously as a potential sexual partners.