Hello Everyone
Before I go into what I plan on asking in my survey, let me tell you that I am suffering from one of my sinus infections. And my husband has some kind of cold with cough (wearing a mask that doctors use in the house). As I am trying to get this infection over with, I am praying that I don’t get what he has. Fingers crossed.
Okay – I have roughed out a few things that I would like to put on my spreadsheet for the survey along with the questions I am going to ask. Here is what I have so far. I don’t want the list to be too long so that I might be able to get answers. My plan is to ask the questions of the office managers. Please let me know what you think. I am going to work up my spreadsheet, copy a page from the telephone book, and make a call or two each day.
Name of Doctor/Dentist/Surgeon, etc. (for my info only and not to be released)
Practice Specialty
Questions:
- Do you use air fresheners or burn candles in your office?
- Does the doctor/dentist, etc. wear cologne?
- Would the doctor/dentist, etc. be willing to not wear cologne for an appointment if the patient is sensitive to chemicals?
- If you use air fresheners/burn candles, are you aware of the hazards these chemicals pose on not only your patients but your staff?
- Would you be willing to consider stopping this practice?
- If not, why?
By the way, my daughter asked what kind of rights I might have with these doctors and their fragrances under ADA. She asked me if perhaps I am being discriminated against. Hmmm! I am going to ask my attorney that question next week.
allergictolifemybattle 
I find I react to fabric softener on the dentist or hygienist. As well I’d be concerned about scented lotions, cleaners, in fact I reacted badly in a hospital once to an ER nurse who was using Bath and Body works scented hand sanitizer, had it clipped right to her uniform 🙂
Yes have to be succinct and I think you’d lose some right after the first question.
You are OK with the procedures, instruments (how they are cleaned) fluoride, freezing etc??) What gloves do you tolerate them using in your mouth? (latex, nitrile etc)
I very much agree that in MANY cases we are being bullied and discriminated against because of our ‘invisible’ illness.
Good for you for doing this and I hope you find a great oral surgeon!
Oh I react to the fabric softener and laundry soaps as well which is a lot harder to control than asking them not to wear colognes and perfumes. I am as okay as I can be with the instruments. I don’t use fluoride at all. I get sick with my biological dentist too – anywhere that I have to remove my mask, I am going to get sick. It is a matter of containing the reaction as much as possible. I have to have them use the nitrile gloves.
Yes, I am sure that I will get some that will not let me finish my questioning but that is okay – I will make note of it. I just want to be heard not just for me but for all of us.
We are bullied and discriminated against for our “invisible illnesses”. It is time it stopped. One baby step at a time.
And thank you. I hope I am able to find one too.
Kathy, your daughter is correct. However, having worked as an advocate for people with disabilities I can tell you that although you have a strong case here of inaccessibility due to your disability because allergies are recognized under the ADA as disabilities, that particular disability has so far been one that has not made it into the courts too much yet and until it does, there is no prescident in the legal books with which to enforce it. I learned so much as an advocate. One of those things was that just because there is a law, doesn’t mean its being enforced or that anyone will heed it until it goes through the courts. There are many laws that go unenforced until someone has enough money to hire a good lawyer and get it through the court system and on the law books. That is the sad truth about how our country works these days.
Consider this, I was an advocate working for a Center for Independent Living. This is a Human Services agency and state funded. All States have them and their sole function is to help people with disabilities to live independently and to make sure that they are not being discriminated against due to their disabilities. While working there I got exposed to Toxic mold. They refused to remediate the building properly and ordered me back to work. Having had an anaphalaxis reaction in the building due to mold, I refused to go back because my boss had her family and boyfriend do most of the remediation on the building.
After an improper and illegal remediation done by my boss’s family and boyfriend for the most part (there is an IL state law that says it has to be a state licensed remediatior) that building was just as inaccessible to me as it would have been if it had stairs and no ramp to my boss who used a wheelchair full time. But after taking my case to the Attorney General of Illinois, OSHA, EPA, a State Senator, a State Representative, Senator Richard Durban, the EEOC, the DOJ, the Labor Relations Board, INCIL, the Dept of Health and the city of LaSalle, I ran out of options as they all refused to do anything to a “sister agency”.
At any rate, I was the person you came to in our office for help if you had a an issue like yours and mine Kathy and I was unable to get anywhere and there was 4 of us sick, not just one. In the end I lost my job because my boss claimed the building was remediated and passed their mold inspection after that. Their remediation consisted of removing 2000 sq feet of the 4000 sq ft of carpeting and this done while part of the staff was still in the building. Then they wiped down everything and did not replace any of the office chairs or curtains on the windows, much less any of the reams and reams of paper in the paper closet….anyway this is where I learned my best lessons about “cross contamination”….but none the less this was all allowed.
Sorry I digressed a bit, and have not been very positive here but this is what you may be up against and I wanted others who read your blog to know the truth about how the laws don’t always protect us even though we have a valid case of discrimination. And the last nail in the coffin they can use against us is this….they can always claim “hardship” if the accomodations to make their building accessible to you is going to cost them more money than they say they can afford!
Patricia – I know your story but my readers need to hear it. What happened to you and how you were treated is reprehensible. I am sure having this knowledge and stating it isn’t necessarily going to get me any further. And do I want someone to work on my mouth that I have pressured to abide by ADA? Probably not. I know this is a fight that most of us will not win.
It will be interesting to see what happens when I begin the survey. As I mentioned in my previous post, this is about being heard whether or not change is forthcoming. Look how long it took for them to recognize asbestos. The more of us that talk about chemical sensitivities, about mold and what it does, and about how these invisible illnesses affect our lives, the better. Maybe one day someone will take notice. We will be the ones everyone comes crawling to when they are sick and can’t figure out why. Okay, I am stepping down from my soap box and going to bed.
As I mentioned in my last comment…I digressed way off my point and in doing so left out something I wanted to share with you Kathy. Your idea of a survey has merit. In fact, as an Advocate this was part of my job. I participated in many of these types of surveys sent to health providers in our 5 county area of service. It was often very hard, even under the mandate of our agency to get those surveyed to take time out of a very busy clinic schedule to answer these surveys. Having also worked for the top Orthopedic surgeon’s office in our area, there were days when the patient load was 101 people per day, so you can begin to see why your survey might not be taken seriously. And there is also the possibility that the dentist may never see it, as mail is screened by the office personel, or even if he does see it, he may hand it off to someone in the office that may not be qualified really to answer it accurately or who cares to answer it accurately. I would hate to see you spend all your time and effort, not to mention money and then get a less than 1 out of a 100 response which our agency received the majority of the time. In order to prevent this, our agency used to offer an incentive, such as free lunch somewhere and still could not get much beyond a 5% response. As a tax payer, I can not begin to tell you how much money is wasted in this fashion all the time at these types of agencies doing just what you are proposing to do on your own dime and time.
Now with all that said, my advice to you would be to let your tax dollars work like they should and tap into your local Center for Independent Living. Every county in the country has one that serves them. Next place a call and talk to an advocate about your situation. This is their job. They are to provide you with information and referral and in the case of inaccessibility and discrimination issues are to be your advocate in putting the system to work for you and getting the discrimination issues resolved so that you have full accessibility when needed. They are state funded and their services are free to you and due to the fact that many people with disabilities can not come to their location, the state pays them to come to you. As an advocate it would have been completely within my job duties to not use chemicals the day of my home visit to you and to put on the Tyvek suit to keep you safe. Just put in a Google search for Centers for Independent Living and you should locate yours with no problems.
Involving your local CIL will give you the leverage and credibility you need with a dentist office, as once they know you know your rights, they usually do try to comply within reason. This was one area where my CIL could usually resolve consumer discrimination issues and medical providers that take in 1 penny of government money as in Medicare have to comply with the ADA or face stiff fines, because the acceptance of government funding makes them comply or lose their funding.
Also as a disclaimer….it’s been 5 years since I was an Advocate and due to brain fog and brain damage from my mold exposure some of this is very hard for me to recall with detailed clarity of the rules and regs at this time, so I could be wrong on some of my facts.
Thank you Patricia. I will do a search and see what I come up with. I know when I was having problems back in the very beginning of this illness and couldn’t get the workers’ compensation carrier to send me my records so that I would have them in court (they declared that they were classified and only certain people could copy them and it depended on how many were in front of me, etc.). I got our local congressman’s office involved. I had my records on my doorstep within three days. Again, when the Social Security Administration tried to get me to pay them back tens of thousands they said I owed them because of receiving workers’ compensation, I again contacted the office. This time a SSA representative from their office met with me outdoors, copied my papers and wrote letters. Not long after that I received a letter that there had been a mistake and I didn’t owe them anything. It is all about leverage.
I will let you know if I am able to find any help in this way.
I would add a question as to whether the staff is willing to not wear perfume/cologne the day of your appointment. My dentist has been scent free but the hygienist hasn’t always been scent free.
In your case, would it be worth asking if they (the doctor/dentist and assistant who has closest contact with you) would be willing to wear a Tyvek suit?
Yes, I forgot about the assistant. I think asking about the tyvek suit would definitely put them outside their comfort zone although I have a chiropractor that will wear one. But I think the business of chiropractic is about thinking a little out of the box. Dentistry – not so much.
Can’t wait to see what your attorney has to say, I bet you have a pretty strong case against Mr. I Must Wear Cologne Every Day.