Has anyone here ever been in hospital, and experienced good or bad deaf awareness? How do or did you cope with explaining to the multitudes of people that you came across that you are deaf [0].
I have had over 45 general anaesthetics, 50 hospital stays and countless out-patient appointments with doctors, nurses, physios, audiologists etc. I have to say until recently the audiologists had the worst deaf-awareness of the lot of them. I have also had to advocate for my partner when she was hospitalised which was extremely stressful.
As a child I realise I benefitted greatly from one of my parents, or other family members/friends being around virtually 24/7 while I was in hospital AND the ‘patronising’ way in which adults often speak to children. My parents made up a sign which said something along the lines of “Natalya is deaf, she cannot hear anything without her hearing aid. Please ensure she has her hearing aid on, and that you are speaking clearly while facing her”…
As an adult my experiences have been very variable:
I’ve had Mr Maxillofacial-Cranky[0] who I saw privately (dad’s work private medical insurance++) twice to check my tinnitus and TMJ were not something more sinister. At the first appointment he couldn’t have been nicer - he must have thought there might be a paper in it. The second appointment was appalling. He was examining my mouth and jaw, his face so close to mine I couldn’t see him. I couldn’t understand what he wanted me to do, so instead of repeating himself he decided to YANK my jaw to where he wanted it. My partner eventually started repeating the instructions extremely clearly and audibly as she was across the room. Mr Maxillofacial-Cranky didn’t like this intrusion and complained at her to stop - which she ignored. Maybe I should have bitten his fingers! *gnash gnish*
In contrast Mr Polite-Orthopaedic surgeon couldn’t have been clearer, politer or had a better bedside manner as it were. The first appointment lasted over an hour, where for the first time in my life I met a doctor whose reaction to my shoulder was “Oh cool, so how does this work then”. He has one of those posher than BBC accents, and used terms like “One would do” or “One would think” which in many people would be pretentious, but in him was somehow appropriate. He spoke quite slowly, clearly and in a consistent way, if I didn’t hear him he just repeated it and didn’t make a fuss.
Unlike his boss, Mr Rude-Orthopaedic surgeon who was rude, cranky and got aggressive with me in a multi-disciplinary consultation. He tried to examine me while standing behind me and muttering longwinded and complicated instructions at me. He then interrogated me by asking very long and strangely formulated sentences. Everytime I tried to answer what I thought he was asking he would cut me off and tell me that I wasn’t answering his question. After a bit of this I was quite distressed, as I didn’t know if I was not hearing, mishearing or just being plain stupid. Mr Polite-Orthopaedic surgeon eventually intervened, getting his boss to back off, and rephrasing some of the questions much more appropriately.
Mr ENT has always been excellent, occasionally he forgets to face me, but never blames me for his small lapses in deaf awareness. He has one of those received English accents and is quite audible - as he should be dealing with ENT all day. Sadly all but one of his underlings are currently crap and foreign so doubly difficult to hear. The nurses in this department have been laughably bad, inaudible, stupid, incompetant for 18 years, and despite having ‘deaf people’ clinics they have no visual alerting system. I really ought to DDA the hospital on that one. I must ask the nurses to leave the consulting room next time they decide to have a chat while I’m trying to hear Mr ENT.
When my partner was hospitalised two years ago, we had had very little sleep for a week because of the pain she was in - that no one would believe she had. My partner was finally hospitalised, given fluids, potassium and vicodin like painkillers which zonked her out, but didn’t kill most of the pain. As no one knew what was wrong with her she was visited by various doctors, nurses and other people prodding and poking her.
Apart from the last surgeon who was clear and audible not one of the doctors had any deaf awareness worth a damn. One got really pissy when I asked her to repeat herself, as I had been shoved to the back of the room to let all her entourage in to look, poke and prod my partner. No one told us what was going on, and I think that was exacerbated by me not being able to hear what was going on. Fortunately the nurses were very good, and I managed to corner one immediately after her shift started so I could find out what she’d been told in briefing. I found people only believed I was deaf the few times my partner heard something that I didn’t and tried to sign it for me so I understood. Whenever we used sign, people remembered that I couldn’t hear and spoke louder and clearer to both of us.
What do you do when you are in hospital yourself, or with a family member who needs you to advocate for them. What things work, and what don’t? Do you always take someone with you to assist with communication, or just hope that the staff aren’t crap?
[0] - Replace with ‘partially sighted’ if appropriate, I’m interested in your stories too.
[1] - In the UK surgeons are referred to as ‘Mr’ rather than ‘Dr’ this is due to some historical thing. A female surgeon is ‘Miss’ regardless of her marital status as far as I know.
May 31st, 2006 at 6:56 am
The hospitals in the US seem to be sufficiently paranoid about lawsuits, so they generally treat deaf patients rather well.
The only thing that’s somewhat annoying is that sometimes the overly paranoid bit makes them go TOO far. Like insisting upon getting me an interpreter even when I tell them that it’s easier for me to lipread than it is for me to read sign language at this point, and that I don’t want to pull an interpreter out of the interpreter’s pool when I don’t really need it. (And more importantly, I don’t want to wait for the damned interpreter to appear. I want the medical treatment, I want it then, and I want it done with fast so that I can get out of there and go about my life.)
Sorry that doctors are so atrocious over there. Is there any disability right’s group that could put the fear into them? Or are there any laws under which you could sue them? Lawsuits are a great motivator for shoddy practices. And medical professionals have an obligation to communicate clearly to their patients.
Could you say “I am deaf. You need to communicate clearly to me. My needs are *VERY* simple. I need you to look at me when you speak, and to speak slowly and clearly and repeat yourself when asked. I’m sorry for the inconvenience, but this is how the situation is. Deal with it. Otherwise I cannot partake actively in the medical treatment that you are giving me, informed consent goes out the window, and we’ve got a legal situation as well as a very dangerous health situation.”
I’d also draft a press release about the shoddy treatment that deaf individuals get at Hospital XYZ, and send it to the applicable people at the Hospital. (Board of directors? media relations person? Board of health? Whomever would be in charge.) Included would be a list of the media outlets that you would be sending the press release to.
May 31st, 2006 at 10:45 am
Interesting that over the pond lawsuits cause more fear than here. I’m not convinced that is actually a good thing. It would be nice if people were X-aware because it is a good thing
rather than because of lawsuit chasing lawyers.
There’s no excuse for being undeaf-aware as a doctor, and I know medical schools are working on the issue now. The rude doctors were both of the older more senior types. They don’t care what anyone things, especially not the patient. Short of sexual-assault complaints against senior doctors, nothing will adversely affect their ’senior standing’. Younger doctors of my parents age and below are USUALLY better. In fact I remember when all my old crappy cranky doctors got replaced with substantially more human models.
A lot of the difficulty is in the length of consultation. Many doctors only have 7-10 minute consultation slots. Talking slowly and clearly takes a long time, which makes their whole clinic even later and slower than usual. If they take extra time for a deaf person then they are even more delayed and get complaints (fail targets) on waiting times for appointments. I’ve had some doctors take their time only to have some whispery annoying nurse intrude to inform us that “time’s up”. I suspect the nurses are the ones who get reprimanded for late clinic times, because no one will dare reprimand the Great Doctor!
As for being an in-patient, hearing is the least of my worries. There is an NHS doctor who writes a blog about hospitals and the NHS. While I don’t agree with him 100%, he makes excellent points about the poor quality of the food (50% of patients in hospital for a week or more suffer from malnutrition), cleanliness (bedpans full of human waste products just left lying around for hours if not days where multiple patients share bathroom facilities) and poor staffing levels and quality of staff (too few qualified staff, and many staff not speaking very good English). I would probably want someone with me while I was in hospital to bring me edible food, and yell at people till the bedpans were cleared up
I couldn’t use terps either, my sign just isn’t good enough yet. It is still substantially more difficult for me to understand BSL than it is for me to lipread. I am lucky I have kim and other friends/family who I can trust to come with me when I need them. I always do take someone with me to a ‘new’ medical situation. Once I have been I have some idea of whether I can or can’t cope without someone else there. If nothing else the other person provides me with an auditory memory. Or in the case of my friend Julia, she made sarcastic comments at the audiologist who was asking me questions while she had my hearing aid in her hand and had her back to me. the “Oh, I always forget about deaf people not being able to hear” comment did NOT go down well!
I know it is a legal situation when deaf people can’t hear. There have been lawsuits taken by people who have been screwed up but they have usually ended up settling and having the reason for lawsuit suppressed as part of that settlement deal. It is surprisingly difficult to enforce the DDA legislation, as the tribunals seem to assume if you haven’t been maliciously disabled, or physically caused severe harm then it has not breeched DDA requirements. I do of course need to write a few letters about DDA stuff, and see whether I get some responses.
Writing to the board of the hospital may be more effective. My mum used to get a lot of stuff done by storming the Administrator’s (head honcho of hospital management) offices and asking why the system was so screwed.
June 3rd, 2006 at 11:28 pm
My Physical therapist always forgot about my vision. He was used to working with fully sighted people and really didn’t get that I couldn’t see things with that much detail. But after a few visits he got much better at explaining things in words instead of actions, that was nice. I think it helped that one day I came in with the cane when I was having a bad eye day. He dint’ realize it was that serious, but I guess he missed my first day in the office when I walked into the wall… I thought the door was wider than it was and someone was walking out so I thought I could get through too. But my arm was still in a sling so I was a little more unbalanced and whack right into the door jam with the good shoulder… HEh. That was amusing.
Wow. Thats… wrong. If you are injuried at all by doctor negligence you deserve compensation. I don’t know how the British system works but you should write to everyone you can get your hands on because that is just F’d.
American Disability and Discrimination breechs are rather easy to prove. They’re really one of the few res ispa loquitor cases where the Defendant has to prove their innocence (at least in my very limited experience). I don’t know if thats always a good thing… but I think its better than the other way around. *shrug*
June 4th, 2006 at 5:05 am
Well the last time I was in hospital it was ok, the only thing i found funny was while I was in Treash or however u spell it!! the lady was asking all the questions, and I told her I was severely deaf and she looked at me and said, ‘yeah right’ and moved on to the next question!! I was amazed it seemed she didnt believe me, but I get that a lot as I have full speach and I can hear certain things very well and I lipread very well!! I found it funny to her reaction!!
My ENT specialist is fantastic, he sepaks towards me in a controled clear voice and he is a genuine nice guy which helps!!
My current Audiologist is horrible!! he is from India, has an accent, speaks low and into his chest!! and even in a controled environment *soundproof room, I cant make head nor tail of what he is on about!! and I have to say he is not in the least bit nice, I just cant warm to him!!
June 4th, 2006 at 10:22 am
Fifty hospital stays, Natalya?! Wow,you’re tough.
I was hospitalized only once and that was when I had my gall
bladder removed. That was an easy procedure and I suspect
even my bitterness in life went with the gall bladder.:)
In my country there were private as well as public hospitals. It’s
good I was admitted to a private hospital. The doctors and nurses
were really kind. I can’t say they have this deaf awareness thing
but when I told them I’m hearing impaired they went out of their way
to help and showed extra caring and compassion. When my doctor asked
questions, my sister will repeat after him and I can easily answer.
My sisters (I have six), tried to be friendly with the doctors and
so they treated me well. In my country, if the doctors were paid
well they’re extra kind to patients but if they are in government
hospitals where pay is small, it’s a different story.:)
June 5th, 2006 at 3:29 pm
Alli: My last batch of physios spent two weeks with me in intensive physio which really helped from the hearing perspective. They got an intuitive grasp of what I could and could not hear. Useful because it was for my shoulder and they often had to stand behind me to prod me to work out which bits were dislocating and why…
As for the law thing, as I understand it UK law works fundamentally differently from US law (IANAL etc) in that whoever is ‘accused’ is innocent until proved guilty - so the onus of proof is upon the accuser. How does the law work in the US - is the onus of proof upon the accused to prove innocence? Is this a too simplistic description? My only exposure to lawyerly types in the UK is my younger sister who to be honest is reading law at a crappy 2nd rate university.
In a DDA case the apparently discriminated against disabled person would have to first prove to a tribunal court that access was denied to them and that it was not ‘reasonable’ for those in control of access (e.g. venue management, organisation, people running the service) to have made access possible - or in fact easy. It can be argued having to be carried up steps in a wheelchair is ‘access’ and therefore that a hypothetical wheelchair user has not been ‘discriminated against’. Or that the disabled person is being unreasonably demanding.
In some cases it is a battle from the start. A friend of mine V, is deaf and partially sighted. She had great difficulty getting large print bills from the council for local taxes. Eventually after getting no readable bill, she stopped paying the taxes - while repeatedly asking for large print bills. The council repeatedly told V to get someone to read the bill to her - because of course a partially sighted person has no rights to privacy!
Even in court the lawyers (her own and the council’s) and the magistrate all expressed the sentiment that V was being difficult and could have got someone to read her bills to her. Or that the poor photocopies were acceptable as large print. V had to go to great lengths to explain why poor, faded, skewed and shoddy photocopies were not acceptable. No one in that courtroom other than V’s supporters had a clue about accessibility and not many showed a willingness to learn or care. V was portrayed as being unwillingly demanding.
In the end V did win her case. The court ordered the council to provide appropriate large print bills as advertised in their literature. They did provide large print bills for a while, and V did pay all outstanding taxes. However, they soon stopped bothering, by which point V had already decided to move to Scotland. In Scotland her council has always provided V with large print bills and anything else she might need.
We’re getting there in the UK, but our disability legislation is only 11 years old. Parts of the legislation only came into force in 2004 (accessibility in educational establishments) and some parts such as the right to accessible public transport do not come in until 2012-2018… So a UK citizen has a legal right to access to the platform/busttop but no legal right to access to the train, tube-train or bus!
June 5th, 2006 at 3:37 pm
Lette: The triage (Treach - could that be the Irish word for it?) nurse should not have dismissed you like that. In her training it should have covered that deaf people do not often sound deaf! Argh - how frustrating. I would say 90% of deaf people are elderly people who do not sound deaf - it does not make their needs and less important! *stab*
My ENT guy also speaks beautifully, he did his degree at Oxford and has one of those BBC English voices. He also realises that hearing aids and cochlea implants are not the panacaea to all hearing loss. My old audiologist on the other hand… Was nice to me until I turned 15 and then started treating me like scum. I think she is good with children and people who do not have an opinion. I know other people who have crossed swords with her - all because they have a different opinion from hers.
I once had an IQ and verbal memory test administered to me by an Indian educational psychologist. I didn’t expect the test which threw me - I was hauled out of some class or other. Still the artificially poor verbal memory test (I couldn’t hear the numbers he was reading to me) only enhanced my claims for concessions on my language exams (A person reading the listening test content - so I could lipread).
I’m planning on complaining to the hospital which does my ENT because their deaf awareness stinks. I attended another clinic the other day which was atrocious and I only knew I was being called because I knew I was seeing the only male nurse in clinic. Oh and the fact that my partner Kim was there to do the listening out for my name - and being my auditory memory!
June 5th, 2006 at 4:16 pm
Athina: I’m not that tough really. All of my surgeries were when I was a child (under 16). I don’t remember many of them. I found surgeries a lot easier as a small child than I did as a teenager. As a child I had a stupidly high pain threshold and scared nurses by not requiring drugs for supposedly painful orthopaedic procedures. I also preferred pain to grogginess, so tended to refuse any sedative medications.
The sister repeating stuff for you is a very sensible thing to do. Here we call that ‘lipspeaking’ which can be done with or without voice. It is sometimes possible to hire lipspeakers who are trained to lipspeak clearly so the deaf person can understand. This is similar to hiring an interpretor if you are able to understand sign language.
In first world countries there is quite a strong movement within deaf people’s groups for the individual to be able to attend medical appointments without having to rely on family members for interpretation or access. In many ways we have less close families, and often want privacy where medical things are concerned. The belief is that an individual has a right to this privacy and should have suitable interpreters or lipspeakers available where needed e.g. in a hospital situation.
There are many reasons why family interpreting is not always ideal. Families have politics and agendas like anyone else - they deliberately not fully inform the deaf person of everything that the deaf person should know. More worryingly is that interpretation is not easy, and should not be the responsibility of an untrained person - especially not a child. It is not uncommon for medical people to expect the child of deaf adults to interpret for their parents. We wouldn’t expect George W. Bush to have his daughters translate French from a political meeting for him, so we shouldn’t expect families to interpret for deaf people.
I am glad you are lucky enough to have access to private medicine and a good supportive family. I hope that someday soon that medical and other access all over the world improves for deaf people. I fight for access in the UK because I believe we should set an example of how it can be done. In the UK there is no excuse, we have the infrastructure and given time and energy we could have the interpreters and medical folk training too.
June 5th, 2006 at 9:39 pm
The accused is usually considered innocent until proven guilty, this is the cornerstone for our criminal law system: I know old english law was the reverse, one had to prove their innocence.
In Tort law its different there are several different tests you can use to prove negligence, malpractice and the like. Res ispa loquitor is when it speaks for itself: the accuser’s main point is to prove that the accused is in a better position to show what happened. Where they had the power in the situation in question so they have a duty to show what actually happened. (At least thats what my tort prof said… i could be completely confused so no one google res ispa and yell at me, k?)
The plaintiff has to prove several elements in addition to that and if they fail to meet a proponderance of evidence then they lose, the defendent only has to shoot holes in any one of the elements in question to be held not liable. Of course it isn’t quite this easy, but I’m trying to keep a lot of the “well it depends” things out of it. (Gotta love grey area, huh?)
But I say discrimination cases fall under this case because the defendent is in the best case to describe why they fired/”mistreated” the plaintiff. The plaintiff cannot be reasonably expected to know what was going on in the defendent’s head, and its very unlikely that the defendant would say “Oh I’m not ____ you because of your skin color/disability/religon/whatev”. Thats why they (at least I think) fall under the res ispa test…
The ADA while flawed puts a higher duty on the fully abled. If V couldn’t pay the bills because she couldn’t see them and they refused to honor the request (which I think is very reasonable) then they would be held liable for her troubles and would have a very hard time proving tax evasion. Especially if she had a clear record of these requests: letters, emails, etc. I haven’t heard of any cases where a request like that could be legally ignored… I mean not that legality stops people but it would be a retroactive response. I haven’t gotten to take disability law yet (next spring, i think) so I’m no where near an expert on the ADA.
June 6th, 2006 at 2:12 pm
Thanks, that sort of makes sense with what little I know about law - which is not a lot. I think the main difficulty with taking cases is that many get dropped because disabled people are statistically on low incomes while not always being eligable for legal aid.
Saying that, a woman has served papers on the Arcadia group (Topshop, Topman, Miss Selfridge, Dorothy Perkins, Wallis, Burton and Evans) for not making their stores accessible to her. This article (http://news.bbc.co.uk/1/hi/uk/5052658.stm) seems to explain some of the expectations.
I ought to read up on UK disability law next time I see my sister. She will probably let me use her passwords to search some law journals. I will ask her if she gets the chance to do disability law, or at least find out for me how the DDA works in legal terms.
I honestly believe that people who do not live with someone who has, or have experience of having a disability believe that we face obstacles on a daily basis:
For example, today I phoned DHL to ask why my parcel had not been redelivered - a redelivery that was made necessary because their idiot delivery person did not use my doorbell for the initial delivery. When I asked for a memo to be sent out to ALL delivery staff reminding them to use doorbells where available I was told “I can’t say that the driver did not use the doorbell, I don’t know, I would’ve thought that if the doorbell was there he would have used it”…
So not only have they failed to use my doorbell, which I can prove because we have computers logging it, but the staff are willing to imply that the doorbell was used even though I have explained that it wasn’t - several times. I pointed out to her that I have caught delivery folk only banging before from her company and others. I will probably make a written complaint to DHL, once I have acertained that my parcel is being redelivered - preferably through a different courier.
June 8th, 2006 at 3:43 am
hope your delievry shows up soon… and i hope the legalese from earlier didn’t confuse you. i’m still learning to speak lawyer so my translations are not quite up to par yet.
June 8th, 2006 at 12:45 pm
Fingers crossed on the delivery - Maxtor (hard drive manufacturer) apparently fwapped DHL and have resent it. We shall soon see if DHL manage to use doorbells this time.
As for legalese, it sounds pretty authentic. In fact it sounds very interesting. So much so I’m considering doing some law courses with the Open University this year. I know law will merge with my undergrad degree nicely - legal information management is quite big. Then again I still want to do the chemistry - so maybe I will have to do both!
September 13th, 2006 at 6:26 am
hi barakta I have had 70 operations 32 on my ears. My husband always comes with me for consults just incase i miss something. As for being in hospital i have learnt to tell the staff i am deaf but do wear and aid and lip read very well. I also get the but you speak so well. Anyway they write it on a board above your bed so everyone will be aware. For me the worst is when you fall asleep and suddenly get woken up by someone proding you or the doctor comes on rounds and you dont hear him walk in and you suddenly hear this booming voice it just about makes you fall out of bed with fright. I always missed the tea trolley as i never heard it come round so i told the ward sister who spoke to the tea lady and told her i was deaf and she should come in front of the bed so i could see her. On the whole i think the hospital staff are all very accomadating. I have always asked the staff especially the nurses if they know how my aid works or if they have ever seen one. You would be amazed how little they know, i ask them if they would like to know and give them a demo. It is easier with the bone conductor aids and my baha, i have the one with the conductor clipped into my skull with the pocket aid and cord.They all find it amazing and i find it helps make them that bit more understanding.
As for gp’s and specialist visits i must say i have a very understanding doctors and well hubby is there just in case.
September 14th, 2006 at 3:15 pm
Hi Mela,
A fellow BAHA user, by the sounds of it you use a Cordelle which is quite rare…
Having supportive doctors and family is good. My ENT doctor is great, but he has a habit of forgetting how deaf I am although I won’t have a deaf side for too much longer as I’m getting bilateral BAHAs.
Are you in the US? I can’t localise you by your writing. I’m in the UK.
September 17th, 2006 at 7:21 am
Hi Barakta. you can find all my details in my first post. I would just like to add that the Cordelle 2 is the strongest so i am hoping that by the time i need a new aid they will have a stronger one.
September 17th, 2006 at 7:53 am
I have found when i go to the doctors i always tell the receptionist i am deaf and they motion to me when its my turn. When i see any new doctors i tell them upfront, on occasions the doctors then direct any questions to hubby who casually informs them i am the patient and therefore they should ask me. It has embarred many a doctor but as doctors they should know how to communicate with us. Every so often my gp forgets i need to see his mouth so i can lip read and i have to remind him. I have always said doctors, nurses, etc should be educated as to our needs. We dont want any special treatment just respect that we like anyone else deserve.