For the past couple of months, I have been serving as the representative of the RSDSA to the Transportation Security Agency's Disability Council. There is a lot of information which is not widely distributed, and I thought it would be beneficial to put it up here for all to see:

Transportation Security Agency issues new Medical Notification Cards

In response to a highly publicized news account of a person with a medical condition’s humiliating experience while undergoing a pat-down, at a security checkpoint, the Transportation Security Administration (TSA) has issued a new medical notification card that fliers can present to airport screeners. Here is the link to the card:
http://quest.mda.org/sites/default/f...Cards%20II.pdf

The cards do not exempt a passenger from screening, but it will alert the TSA employee that a health condition exists.

Please understand that the purpose of these pat-down is to detect small plastic bags of explosive or highly combustible liquids that may be taped to a person’s skin. Accordingly, a metal detector will not pick them up. The new body scanning x-ray machines are supposed to be sufficiently sensitive, but they are not always available nor will they always give clear readings: especially for travelers wearing loose or baggy clothing. In the event of an “ambiguous reading” on the x-ray, a pat-down by a same-sex TSA employee is required.

Nevertheless, travelers with a “hidden disability” (including RSD/CRPS) are entitled to a “private area” in which the TSA asserts that they will be padded down with “light pressure and contact when inspecting a sensitive area or painful area,” http://www.tsa.gov/travelers/airtrav...rial_1986.shtm after first being “offered a disposable paper drape for additional privacy before the beginning of a pat-down.” http://www.tsa.gov/travelers/airtrav...rial_1567.shtm

It is strongly suggested that prior to flying, you obtain a recently dated letter from your physician addressed to TSA Employees/Security Checkpoint Supervisor stating that you have been diagnosed with Complex Regional Pain Syndrome (CRPS), a neurological syndrome characterized by intense chronic burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch and he/she recommends that you be (1) scanned by an electronic scanning device rather than being physically searched which will cause extreme pain and prevent your traveling and (2) should a pat-down be necessary, it should be done in a private area, under a paper smock, after you have had the opportunity to privately remove as much clothing as you feel is appropriate to minimize to pressure of the pat-down. Here are the current CRPS diagnostic codes:

CRPS has been assigned the code number 337.2. It has been classified into four categories:
(1) 337.20 – unspecified site
(2) 337.29 – other specified site
(3) 337.21 – upper extremity
(4) 337.22 – lower extremity

It is important that you carry enough copies of the doctor’s letter for each time you anticipate going through security before you return home, as each TSA facility that screens you may wish to keep a copy of the letter for its records.

Finally, because these procedures may be cumbersome and the initial TSA officer you encounter may be unfamiliar with them, we recommend that until they become thoroughly familiar with the routine (and pat-downs may be required only on occasion, depending on the x-ray) travelers who may be required to undergo pat-downs in private TSA controlled areas allow themselves one hour of additional time beyond the suggested airport arrival of 90 minutes for domestic passengers checking baggage, and 2 hours for those on international flights.

Here is a link to more information from the RSDSA which may be helpful:
http://www.rsds.org/5/news/2006/TSA.htm

Mike

Thanks Mike. I never thought of the pat downs for Suzy. I did for cabin pressure.

I participated this afternoon in conference call with representative of various disability organizations. The highlight of the call was when a representative of an organization for the blind - who travels 2 - 3 times a week - reported that, when going through security with his guide dog, he invariably cleared but the dog's harness triggered the dog's need for "secondary screening" (pat-downs) at which point he was asked - "over a dozen times - the sex of the dog, so that the pat-down could be done by a same-sex TSO! [Transportation Security Officer.] Not only that, but he had reports of this happening to a number of other people. At which point, the call hosts made clear they didn't know whether to laugh or cry.

That, and it provides a nice lead in to a difficult subject. When a person with disabilities or a medical condition is required to go through secondary screening, they have the right to request that it be done in private. At which point, not only is the secondary screening performed (as always) by a same-sex TSO, but the passenger also has the right to have the witness of her/his choice present. And, and as noted above, a paper smock of some kind it provided so that the traveler can remove bulky items of clothing, e.g., sweats, to allow for the lightest possible touch.

Now, I fully understand that the national director of a major support group for the blind, is going to travel with much greater frequency than someone with debilitating RSD/CRPS, but we all have to travel from time to time.

So the question is, is whether a significant number of people would prefer a choice of either partially disrobing in complete privacy, putting on a paper smock and then being patted down from there in a private room with a witness, etc., or, under the same circumstances, completely disrobing, putting on a gown, and then, after the TSO has gone over your clothing with a wand, dropping the smock for 5 seconds, raising your arms and turning around. And consistent with the secondary search policy, it would not be any more invasive than that.*

I understand if the whole concept seems outrageous to some of you, and I wish the emphasize that this would be a strictly voluntary option. So with that, would anyone be interested in having this as an option? With sufficient interest and its own internal approval, the RSDSA could then formally submit this as a proposal to the TSA.

And in the event of some interest, I may put up a separate polling thread to gain further input.

Let me know. Thanks.

Mike


*As opposed to when I was a young man with long hair trying to enter Canada in a car with some friends, long time back, and the agent found OMG "a seed!" on the floor of the car, at which point, we and all of our possessions were subject to a significantly more invasive procedure, not that anything turned up.

I know Suzy would not want to put on a paper anything, a stranger seeing any naked part of her at all. Same sex human for same sex dog. What the hell is going on?

Jim -

We can only play the hand we're dealt, and right now the paper smock is offered as an alternative to a somewhat heavier touch (careful to use only the back of the hand) through clothing, if called upon for a secondary scan. For how these issues are handled in other contexts, see, "What To Expect At The TSA Checkpoint if You Wear a Breast Prosthetic" at http://www.tsa.gov/travelers/airtrav...rosthetic.shtm and "What To Expect If You Are a Person Who Is a Victim of Sexual Trauma" http://www.tsa.gov/travelers/airtrav...al_trauma.shtm

I'm just throwing out the "drop the smock" idea another alternative, that may be may acceptable to some in the CRPS community, any other suggestions - given the constraints of THE SYSTEM, are welcome. For the TSA's general policies on "Travelers with Disabilities and Medical Conditions" - not including at the present time the FAQs for survivors of breast cancer and sexual trauma, see http://www.tsa.gov/travelers/airtrav...eds/index.shtm and in particular, "Hidden Disabilities" at http://www.tsa.gov/travelers/airtrav...rial_1374.shtm (Note, however, that the medical notification card referred to in the opening post is not yet included on the TSA site, but is apparently found somewhere under www.disabilities.gov as well as on a number of organizational sites: the TSA is working on getting its website act together.)

Seriously, if anyone has any better alternatives - in light of the underlying constraints - let's hear them.

And finally, as far as "same sex human for same sex dog" is concerned, I can only fall back on the ultimate Yankee, Ralph Waldo Emerson:

A foolish consistency is the hobgoblin of little minds, adored by little statesmen and philosophers and divines.

Mike

What crosses my mind is the pain she would have to go through just changing cloths on just any given day. We were recently in the eastern shore of Delaware. We were walking on the shore line, the water was cold, about 65 degrees and the air temperature was 100. Suzy was barefoot and because of the contrast, I believe, her feet soon turned blue and became very swollen. She couldn't get into her shoes and had extreme difficulty changing pants. That was last week and only today her feet are finally deflating. However, I suppose if we fly she could wear a bathing suit, a tight one.

I don't know about Suzy, but constriction is death for me, even for less than a minute, depending upon location. That said, it absolutely gives the cleanest profile with "advanced imaging techniques." If changing clothes wasn't such a pain - and wearing something tight was tolerable if only for a few minutes - I would recommend wearing something "form fitting," just long enough to clear security, switching into whatever is most comfortable in the handicap stall of the first rest room on the other side.

As far as swelling is concerned, there is probably a good argument for the occasional use of diuretics following a flight - in consort with prescription potassium supplements - but I stress occasional. (At one point I was using them fairly regularly, until I realized I was dependent on them to urinate, I was then hooked up with a kindly nephrologist who explained that for every liter of "interstitial fluid" I wanted to lose, I had to part with two liters of blood.) Then too, being dehydrated mid-flight is never a good idea.

Hi,

I have RSD in my left knee/leg. I wear, on this leg, the long version of a DonJoy post operative knee brace, attached to a DonJoy post operative ankle stirrup. I do not wear the brace and stirrup because I recently had surgery in my knee, but because I find the brace and stirrup very effectively support my RSD-affected knee/leg.

When I traveled to a foreign country from the San Francisco International Airport, a TSA employee asked me to remove my brace and stirrup to pat my leg down. After explaining my situation to the TSA employee and showing her a medical statement from my primary care physician, I refused to remove the brace and stirrup. At the time (it was in 2005), the TSA allowed a disabled person to refuse to remove their brace and stirrup. The TSA even mentioned on their web site that a TSA employee should not ask a disabled person to remove their brace and stirrup. I do not know if this is still true six years later. The TSA employee patted me down everywhere on my body, except on my left leg. She had a sort of stick made of plastic; a sort of sponge was fixed to one of its ends. She patted the brace and stirrup down with this sponge stick while explaining to me that she was looking for traces of explosives. She went away with her sponge stick for a while. When she came back, she asked me if the brace and stirrup had been onto the floor/ground. I replied yes, because I had fallen a few times while wearing the brace and stirrup. Did the explosive test come back positive because there was dust on the brace and stirrup? She never told me. The most important thing to me was that the TSA does not force me to remove the brace and stirrup. I am happy they respected my desire so as not to endanger my RSD leg and cause a fall onto an unprotected leg (when it is not braced).

I do not know if I was just lucky or if experiences vary depending on the airport from which a person travels.

I appreciated that the TSA accepted not to scan the bone growth stimulator with which I was traveling because such a device should not be scanned for technical reasons I do not understand.

Priscilla

Dear Mike,

I know I'm a bit late in responding but I want to thank you for all you are doing, so many of us have to travel and for you to take the time to try and help make a difference, truly makes me proud to know you ( not that I wasn't proud before mind you )

You provide so much help to all of us here, please know that you are greatly appreciated in so many ways.

Dee

I used to fly alot to go to my RSD doc. Make sure you take your pain meds & Xanax if you have a script. Cabin pressure sucks but not much you can do about it. When you reserve ticket, tell them you are disabled & need assistance....wheelchair, etc. I noticed that when we got one way tickets, we always got extra pat downs. They didnt care to even listen about the RSD. Once they lost my luggage, huge ordeal.....by end of night I was curled up in a ball on floor in baggage office crying to just go home. They found our bags & took me up to a nice hotel in the airport, but the damage was done.