“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.