“Paraplegic” feels trapped in a non-disabled body

Guest blog post by Bob Vogel

Chloe Jennings-White, a Ph.D., chemist living in Salt Lake City, Utah, lives her life as a paraplegic — and wheelchair users, she also wears long leg braces that lock at the knee to enable her to ambulate with crutches. She is comfortable and happy as a paraplegic. However, when she needs to use the flight of stairs in her house, she gets out of her chair and walks up and down the stairs, with the leg braces unlocked, enabling her legs to bend at the knee. She drives, but rather than the slow cumbersome task of taking her chair apart and transferring it into the car, she stands up and walks to the back of her car and puts the chair into the trunk. The car she drives doesn’t have hand controls.

Like many wheelchair users, Jennings-White enjoys outdoor activities. While most wheelchair users employ adaptive equipment and arm power to engage in these activities, Jennings-White simply removes her leg braces and goes on 12-hour hikes in the woods and climbs 11,000-foot mountain peaks.

When she wants to go snow skiing, Jennings-White stands up, clips into her ski bindings and spends the day on the slopes as non-disabled skier — at the top of a ski lift she will hike a considerable distance in order to get to the best snow on distant, very steep expert runs or chutes — runs with rocks or cliffs on each side.

If this sounds confusing — it is — because Chloe Jennings-White is only pretending to be a paraplegic. She chooses to live her life as a paraplegic because she has a rare condition known as Body Integrity Identity Disorder (BIID) — characterized by, in her case, by an overwhelming desire to become a paraplegic. For her, using a wheelchair and pretending to be a paraplegic helps ease this desire.

As of late, Jennings-White has been making rounds on the media circuit, first in January, appearing in Taboo on the National Geographic Channel in the episode titled “Secret Lives,” then as a guest on the February 27th episode of Anderson — the Anderson Cooper talk show. On the shows, Jennings-White explains that using a wheelchair helps her deal with her BIID.

Jennings-White says she appeared on these shows to bring attention to BIID and to help others with the condition to let them know that they are not alone. For that, I applaud her efforts. I can’t begin to imagine how difficult it must be to have BIID. According to an article in Newsweek, MRI studies of people with BIID suggest the disorder stems from a problem with the right sphere in the brain’s parietal lobe, the part of he brain that constructs body image.

The term that people with BIID often use to describe themselves is transabled. In the Newsweek article, Dr. Michael First, a professor of clinical psychiatry at Columbia University in New York, says there are parallels between BIID and gender identity disorder (GID) in which people feel that the gender they were physically born with is not their true gender.

As a side note, Jennings-White used to be a man — something she openly discusses in her blogs at transabled.org.

In Taboo “Secret Lives,” Jennings-White explains that she truly feels like she is a paraplegic and feels like she is faking it when she isn’t in her wheelchair. “It (using the wheelchair) is like a temporary stopgap,” she explains. She goes on to say, “in order to live a completely fulfilled self-actualized life is — for me — is to be paraplegic.” She explains she has a desire to have surgery to become a full-time paraplegic. “When I have an operation to become paraplegic I think the eventual outcome will be that I will feel like a complete authentic person and very happy.”

That’s a terrifying thought.

In a chilling clip on Anderson, Jennings-White explained that in a 2006 she inured her back and a doctor told her she needed to get rods to stabilize her spine. She refused to get the rods, and skis aggressively in hopes of having an accident and re-injuring her spine enough to become a complete paraplegic!

The TV audience’s reactions and the comments on the website toward Jennings-White are incredibly angry. Although I think of myself as open minded and empathetic, I felt angry, as well, and I couldn’t figure out why. She is a person with very real psychological and neurological disorder, and using a wheelchair makes her feel better. Why should this bother me? It’s not like she is using accessible parking spot or anything. There are others with the same disorder, and she is putting herself out there in the media to help them. This is a good thing. Yet, I couldn’t put my finger on why this upset me.

To try and find my answer, I carefully re-watched Taboo “Secret Lives,” pausing to take notes. Then I went on the web and spent some time reading Jenning’s-White’s blogs and her responses to comments. Upon re-watching the Taboo “Secret Lives” episode, the first thing that I noticed was Jennings-White IS parking in accessible parking spots, complete with a parking placard! WHAT?!? The segment says she has a slight limp, and shows clips of her walking up and down stairs, and shows her hiking in the woods with no leg braces. Jennings-White describes going on 12-hour hikes. From blog entries and the web it is clear that she scrambles over boulders, she hikes up mountain peaks, hikes to, and skis down very steep, expert only ski runs. Yet, she needs a parking placard?!

Jennings-White’s “portrayal” of a paraplegic also creates misconceptions and reinforces stereotypes of paralysis, including the idea that being paralyzed is all about the wheelchair and not being able to walk. Using a wheelchair and walking doesn’t even make the “top ten” list of difficulties that paralysis presents. A glaring example of this is her “paraplegic disguise” consisting of a wheelchair, leg braces and crutches, but NO CUSHION! Without a proper cushion, a real paraplegic would be hospitalized with a life threatening pressure ulcer within days!

Moreover, Jennings-White’s media portrayal of somebody that uses a wheelchair, but can walk when they “really need too” adds more confusion and misinformation about paralysis. The next time you or I need a wheelchair lift, or an aisle chair and we are asked “can’t you walk ‘just a little bit?,’” we can thank her.

I got further angered at Jennings-White because, for a person who insisting that she “feels like a fake” anytime she is out of her wheelchair, and feels like a paraplegic trapped in a non-disabled body, she sure manages to get over these “feelings” quickly when she wants to go hiking, skiing, go up and down the stairs or load her chair in the car. I believe her BIID is real — but using a wheelchair and leg braces only when it suits you isn’t “being a paraplegic,” it’s just playing dress up.

In terms of being paralyzed, using a wheelchair and not being able to walk is just the tip of the iceberg. I suggest Jennings-White try experiencing the full paraplegic experience. If she wants to go up and down stairs, she should drag herself up and down with her hands. No walking her chair to the trunk to load it into the car. No walking, hiking, mountain climbing, skiing, “when she feels like it.” Get a professionally fit wheelchair cushion, do mirror-skin checks twice a day to avoid pressure ulcers. It is good practice—she will need it. She should manage bladder with intermittent cathing, or use an indwelling Foley. She should have a bowel accident or two — preferably at work — and see how “self actualized” she feels.

But the most egregious part of the National Geographic Taboo segment — the one that got me furious — is the suggestion that letting children see a person in a wheelchair may cause BIID! In the segment — at around 20:20 — the narrator says, “At Cambridge University Chloe has a successful career developing antipsychotic drugs. She has over two dozen patents to her name. So how does such an intelligent and successful women end up leading such an extreme double life?” Then we hear Dr. Michael First say, “The most common experiences — and this applies to Chloe — is early childhood exposure to someone with that disability. It’s very common for children to identify with roll models of a family member or a relative.” While this is being said, viewers see a close-up of Jennings-White’s face on the left side of the screen and a close-up of Dr. First speaking right side of the screen. Next Jennings-White says, “My aunt was paraplegic and, um, I would always be fascinated by her leg braces. She would come in to me and say these are silly things aren’t they? And I, what I wanted to say is, ‘No, I think they are lovely. I want them, too.”

WHAT?! If kids see us in our wheelchairs it might cause BIID?! Does that also mean that if a little boy sees a woman, he will want a sex change?

I hold a bachelor’s degree in communications, so I understand that there is no way of knowing what Dr. First or Jennings-White meant, but the way the show is edited sends a clear message, “Keep your kids away from people in wheelchairs, especially friends and relatives. If a child sees a wheelchair, it might cause BIID!” This is a horrible and damaging message. Imagine being a wheelchair user trying to adopt a child and the adoption agency or mother of the child up for adoption sees this!

Speaking as a wheelchair user that became a T10 paraplegic at age 25, I think about all of hard work and time it took to learn to live and thrive with paralysis. — even more importantly, the time and work it took to accept it, and move beyond it. It is unfortunate that Jennings-White’s condition appears to make her to constantly focus on the wheelchair and on paralysis because she feels fake when she is out of her wheelchair.

 

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Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at
online.relations@therohogroup.com.

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Comments

14 Responses to ““Paraplegic” feels trapped in a non-disabled body”
  1. Willemina says:

    It’s disturbing to say the least, knowing that there are people out there who want to be disabled to the point where they will need a carer and this man/woman wants to have her spinal cord cut so she could be a real paraplegic?? In all honesty, the transsexual thing is just a tiny blip but for someone to WANT to be disabled, with all the extra, small, annoying aches and pains as well as the big issues real paraplegics go through… I’m sorry but there is just no way you can call that normal behaviour. I don’t buy the Body Integrity Identity Disorder thing… these days there’s a need to put a name to every little bit of behaviour people show, but Jennings-White is obviously not paraplegic enough to get out of her chair and walk up the staircase in a normal fashion. BIID suddenly is far away, or at least until she’s at the top of the staircase, and then picks up her wheelchair again and she turns out to have BIID again.

    This kind of behaviour is a slap in the face of real disabled people! Jennings-White should go live with disabled people for a few months – or even a year – to see what it’s really like to be disabled. No getting out of the wheelchair to get up the stairs, oh no stay in your chair and see what real disabled people have to battle every day. And to hide it from your family is just one other thing that shows that suddenly her psychological disorder is gone again and she can act all normal.

    Clive/Chloe Jennings-White, you have no idea what you are doing, asking doctors to cut your spinal cord. Are you so desperate to want to be in a wheelchair every minute of every day, so people can feel sorry for you???

    I have MS, I am not wheelchair-bound (yet) but that prospect might happen in the course of my life. Every day I pray NOT to end up in a wheelchair, to be able to go to work again and not being stuck at home every single day. I had to quit my job at the age of 36 because of the severe fatigue and daily/nightly aches and pains I have. I wake several times a night because my body hurts, I am sometimes so tired I can’t even walk or talk and every second of every day I wished I was still at work, enjoying life with my friends, family and colleagues. So put yourself in my shoes Jennings-White, and you will be ashamed of what you want. I am almost 39 now and I still wish my life had turned out differently, and every day I hope that one day my neurological illness will be able to be cured so I don’t and won’t end up in a wheelchair every day. Shame on you, absolutely shame on you!

  2. Mike says:

    I can say that BIID is a real condition, like it or not its real. I live with it every day and for as long as I can remember. I feel that it is somewhat like transexual, where you feel like you are in the wrong body. Why is this more accepted than those like me with BIID. I feel like my body is not mine and I need to be disabled, in a wheelchair as an amputee. I cannot describe how intense this feeling is and with no one to turn to its almost impossible to alleviate the struggle it causes. I do understand to a point that it is not everyone’s choice to be disabled in any way. I do not to this for benefits or attention. I wish I was not like this, but all I can do is accept it and try to deal with it as best I can. I know the only way to alleviate the pain is to fulfill my desire just as someone who is transexual. There needs to be a better understanding of why this happens in people, and I will do what ever it takes to help understand why this is the way I am. I will no longer hide and try to fight this on my own, I am speaking up so hopefully someone will listen and help.

  3. Michelle Smith says:

    I was upset to read about this. I am paralysed from L1 level complete. I am happily married, after my accident, and have a full and fulfilled life. However, there is so much I wish I could do. I have accpeted I will not walk again but that is only part of it. I wish I could have shared more with my husband on our wedding night when we made love as a married couple for the first time. I wish toileting was easier, I wish having a period took less time, cos despite what they say being in a wheelchair sat down all the time, makes it slow down, gravity aint so strong!!!

    I wil not condemm this woman, but if she does succeed in becoming like me then she will find it a world away from what she thinks it is like.

  4. Benjamin P. Aumenta says:

    Does anybody know how to get in touch with this woman, Chloe Jennings-White?
    Or, if you could pas my information along to her, I would appreciate it.
    Benjamin P. Aumenta
    bpa18@verizon.net
    973-777-1826
    Thank You

  5. ralph says:

    Read the book “Paralyzed Success”

    you will love it

    Amazon

  6. Caitlin says:

    I am absolutely shocked!

    Body integrity identity disorder? Shall we call suicide “life integrity identity disorder” and say its ok to try?
    Or shall we tell child rapists it’s ok they are simply suffering “sexual age identity disorder” or something equally rediculous? Many rapists are convinced within themselves the child IS old enough to have sex and they just know somewhere within them they were supposed to be together. Many self mutilating teens will insist they feel like they should be covered in scarrs – just like you feel you should break your back and be in a chair SomeTimes (you are NOT living as a paraplegic, you play at it when it’s easy, but skip the hard stuff).

    We say they are suffering mental health issues and try to heal them, we ban them from dangerous places and being near temptation, we don’t say “here’s a razor” “go work at a school so you can fantasise” and I don’t understand why it’s ok to say “ok live in a wheel chair”

    People with real physical disabilities have enough troubles without you mentally abusing them! Mocking them, acting like its desireable. Just cause you really really want and feel like u should be doesn’t mean you ARE. This is nothing like transsexualism and I find that very offensive. My best friend had a sex change so she could become all she could be, not to put hurdles ahead of her. She didnt take off her dress just cause she wanted to go to a boys night. She didnt insult anyone in the process, and she certainly didnt self harm.

    Someone TRYING to snap their spine should not be allowed on a slope anymore then someone who is suicidal should be allowed a gun.

    You want to insist it is a real disability, and you aren’t just like my 5 yr old pretending to need glasses cause they look cool or she wants to be different? Fine I am willing to accept you have a genuine mental health issue. It should be dealt with like any thing else in the category – if they can’t protect you from yourself or trust you to take care of yourself you should be detained just like anyone else who is willing to do damage to themselves or show a total lack of care for their own safety.

    I was paralysed after shattering my L2,3 and 4 vert. I fraught as hard as I could and recovered – many dont have any chance. I don’t know why you would choose that life.

    What I do know is when I tried to leave the hospital early I was detained under a mental health order as I wasn’t doing something that was best for my health.
    Why should you be allowed to try and break your spine? Why should people and perhaps kids have to witness something like that?

    And most importantly, why Di you think “this is right for me” is a good enough excuse, that’s not how society works, no matter how many hours a man spends telling me how right it feels and how he knows it’s meant to be like that and he can feel inside it’s good and what he needs, I’m not going to hand over my daughter for him to rape, and I wouldn’t excuse child porn cause it makes him feel better to pretend.

    You’re unwell and I feel sorry for you but I am furious the doctors would let a suicidal and self mutilating individual who idealizes having a disability walk the streets OR post such offensive statements. You need to be protected from yourself, society needs to be protected from your actions and selfishness (there are people that NEED the services you STEAL by choice) and disabled people deserve protection from your horrible hurtful and emotionally abusive attitude.

    We do the best we can with our own limitations and the services available, and often feel guilty about needing extra from friends family and society. You’re selfish and a thief of limited services and you need to get help to get better, not worse!

  7. Chuck says:

    Hmmm… Its the same as being gay. The only difference is that the psychological condition of being gay is acceptable.

  8. Laura Prince says:

    I am completely astounded I read an articled about Chloe in Closer magazine, however no matter how many times I read the article it will never make sense to me being a quadriplegic myself I just can’t understand why anyone would knowingly put themselves in the position of a disabled person. According to specialists it’s a disorder like transgender sufferers, but they are completely different anyone can change their gender if they so wish. on the other hand a disabled person can’t just click their fingers and their disability disappear can they.

    These people that choose to pretend to be disabled are just making a mockery of the struggles faced by a real disabled person because they can be “Disabled” when whenever they wish but turn it off when they hit an insurmountable obstacle

    I’m sure I’m speaking for the majority of the disabled community when I say we wish we could pick and choose when we are wheelchair bound and when we are not. People with this condition may think they want to be disabled but once they have the operation they can’t just change their mind and revert back to ” Part Time” disability when they feel like it It’s PERMANENT

    If these people are allowed to have this operation to become disabled then there will be a significant drain on the resources provided for the sick and disabled. Anyone then can afford to pay for the operation should suffer the consequences and be forced to pay any resulting care costs in full and not be allowed to rely on the free services provided by the NHS and social services. Before any sufferer plans to have this operation I challenge them to live as a permanent paraplegic for a year instead of just play acting believe me this would be better than any psychotherapy that can be provided

  9. Chloe says:

    I am completely amazed at the rubbish people feel compelled to make up about me. Here’s a cheat sheet:

    1. I do not live my life as a paraplegic. I have never told anybody that I am paraplegic. I do not pretend to be paraplegic. I do not treat BIID by pretending to be paraplegic.

    2. I never used to be a man. It is extremely rude to refer to anyone who was born intersexed other than in accord with their gender identity. “Man/woman is just as derogatory an epithet as “shemale”. I expect people with disabilities to know better than to hurl derogatory epithets at other disempowered groups.

    3. I DO use a wheelchair cushion. Full footage of the Anderson segment shows this without any ambiguity.

    4. I DO check for pressure sores with a mirror on the underside of my left thigh, where I have no sensation due to the SCI.

    5. Likewise, on account of the SCI, I HAVE had a bowel accident at work and I HAVE done intermittent self catheterisation.

    6. The majority of wheelchair users are able to walk and use a wheelchair only some of the time.

    7. I AM physically disabled (fibromyalgia), as are most of my friends. Most of my friends with BIID are also physically disabled (substantial SCI, cerebral palsy, multiple sclerosis, etc. To suggest that I do not know what it is like to live with a disability is disingenuous.

    I could go on and on , but you get the idea. I am perfectly willing to address any criticism connected with the realities of BIID. However, it is merely tiresome to address people’s made up fantasies. If anyone has serious criticism I shall give it due consideration and answer in good faith. If you wish you may continue the discussion on any of my posts about the subject, e.g. http://transabled.org/thoughts/other-thoughts/chloes-thoughts/legs-when-convenient.htm

    I wish you all well.

  10. Chloe says:

    Having digested what has been said by several people, I ammend my opinion to assert that this goes beyond delusional fantasies, which perhaps can be excused, and is in fact truly offensive behaviour.

    1. It is offensive to say that fibromyalgia does not count as a disability. Easy for you to say since you don’t have fibromyalgia! Obviously you don’t have any friends with fibromyalgia. Obviously you have never educated yourself about invisible disabilities. Get real!

    2. It is offensive to stigmatise intersex conditions. It is still considered by many to be a birth defect, and by some to be reason for “euthanising” newborns. People are driven to commit suicide by the social stigma. Those who seek to perpetuate this have blood on their hands. My friends with cerebral palsy would definitely have something to say about Nazi influenced attitudes.

    3. It is offensive to suggest that anyone can change their gender if they so wish. Evidence suggests that gender lies primarily in the bed nucleus of the stria terminalis. Such brain surgery is not yet technically feasible. Try telling a female to male transsexual that they can just go ahead and change their genitalia. Oh, yeah, there’s that little matter of $100,000! Easy for the wealthy to say!

    4. It is offensive to suggest that people with BIID might have the option of getting anything paid for. Dream on! I live in the USA. No NHS! Nothing free! I was dropped by my health insurance as soon as I was diagnosed with fibromyalgia Everything since then has been out of pocket.

    5. It is offensive to stigmatise ANY mental disability or psychological condition. Indeed, in the 21st century, I would say that it is generally considered completely disgusting behaviour so to do. I have friends who are intellectually disabled, have bipolar disorder, depression due to cancer, etc. I will NOT tolerate them being ridiculed.

    6. It is offensive arbitrarily to make up lies about other people. I am appalled that those who run this website condone contributors making up anything they like about anybody, with concessions to neither truth nor people’s feelings.

    Again I could go on and on. Take a good look in the mirror. I welcome serious discussion. But if people only have interest in mendacity and disrespect, then there is nothing to discuss.

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  12. Patricia Lee says:

    A troll is still a troll, no matter how articulate and well educated. The way Chloe dribbles out “information” to suit her purposes naturally leads people to certain assumptions, as she knew it would. then they are disgusting for making those assumptions. Whatever. I am happy to be disgusting.

    Don’t feed the trolls.

  13. Tobysgirl says:

    I actually have fibromyalgia. No one I know with fibromyalgia uses a wheelchair. No one, including myself, with fibromyalgia goes on strenuous hikes or goes downhill skiing. Any exertion will increase fibromyalgia pain, so one learns to pace oneself and take lots of rests. Fibromyalgia does actually exist, but it is also easily faked by someone who wants to claim a disability. A comedian once said that since he had emotional disabilities he thought he should have a handicapped placard. No one who can go on a 12-hour hike — a one-hour hike! — should be using handicapped placards.

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