Tell Me All About Employment & Prejudice?

[Elaine H]

Hi Guys
I am pleased to say that my book "Fit For Life" is coming on really well, and having recently completed the chapter on employment and my experiences of prejudice and ignorance, I would be extremely grateful if all you wonderful people out there, would mind sharing your experiences with me, and of course people reading the book? I understand if you do not wish to be named, I can just say Mr AD London, or whatever, but if you are happy for me to use your name, again no problem. I thought that a few pages of examples of other PWE's experiences, and maybe what we did about it, might help other newly diagnosed people to grit their teeth and fight back, also to see that they are not alone.

I will also be asking people for their examples of funny or embarassing experiences, and descriptions of PWE's auras, I just know how isolated and alone I first felt when diagnosed, and if we can all share our experiences, I really hope we can help, again anonomously or otherwise.

I just experienced prejudice again, listen to this. I rang about a job, told thenm about my experience of heavy plant over the phone, and he offered me an interview the following week, driving came up in conversation, and I mentioned epilepsy!!!! AAARRRGGGHHH!!!! He could not get off the phone quickly enough saying " I er um..... call you back" Yeah right he did! Anyway, I have been ringing and ringing him, no reply, so I decided to hide my number, rang back, he answered first time, I said to him...." Oh hello, is that Merrill?" He was very on edge asking who I was, I recognised his voice and said " Oh hello Merrill, remember me, you were going to call me back last week? I take it you don't want to interview me any more, he made up some rubbish about being busy, not looking for anyone anymore, etc etc, I said..." Oh right, maybe I shouldn't have mentioned epilepsy in our little chat eh Merrill, and then maybe I'd have got my interview, I will be writing to your boss and letting him know about your methods of dealing with my enquiry!"

We have got to do something about this, people say oh there there, how awful, oh it shouldn't be happening, oh how dreadful, but the truth is. it is happening, it's the 21st Century, and people still think we are all going to fall over every five minutes and thrash about on the floor, foaming at the mouth!!! We have got to educate employers, and I for one will continue to raise awareness in the UK!!

I'd appreciate your feedback on your auras, employment,and funny and embarassing experiences folks. Hope you are all ok, my hand is healing, having physio now. Keep smiling, and heads up high!!!

Lotsalove

Lainey H xxxxxxxxxx

 

[Nakamova]

Good for you for confronting the guy about his employment discrimination. Is there a group you can contact about that kind of behavior?

 

[Elaine H]

Not really, but I have written to the guy who owns the company, and let him know that I am still in touch with a lot of people from this very incestuous industry, and that maybe I'll talk??!! Hopefully he'll poo his pants!!
I want to hear from you guys about any trouble you've had in the workplace now?

Cheers
Elaine x

 

[knothing]

Great to hear about the book.

I had my first adult t/c at work so it was hard not to have people know. I heard rumors of a nickname but nobody ever said it to me. Then one day unknown to those who said it I heard them call me 'Twitchy'. I never realized how painful it would be to hear someone say it. I let it go because nobody ever said it to me and was not sure much else was going on. I was on a project for over a year and made a mistake once with getting someone to a site on time. I had food poisoning on that day and forgot to talk to the person. A week later on got wrote up for it and policy stated to get written up I must be under-performing on a consistent basis. When I asked about that the person writing me up stated he had to have something on me for his boss had higher standards than the policy. A nice way of making sure if I had a seizure he could create a means to fire me. Unspoken but very true based on my knowledge of them.
Also during this I turned the tables and said if this is how it is going to be fine. I said if I ever hear 'Twitchy' again I will go to the head of HR. He knew this meant it would be the loss of a job for anyone because that was the policy. Discriminate and be terminated. Nobody has said it again. Doesn't mean it doesn't still bother me. Unknown to the rest of my department I had a friend who told me of the name and spied on them to make sure.
That is all I have from work thankfully.

 

[Elaine H]

Thanks For Sharing that with me...

Hi Knothing

Cheers for that, it sounds so very familiar unfortunately, it's a case of yep, I've been there and got the proverbial tee shirt!! Thanks again,I'll use it if I may as an example to help others in my book.
I'll keep you posted as to how it's going, but's it's 53,000 words now, I'm really getting on well. :clap:

Lotsalove

Lainey xx

 

[knothing]

Use what you want from that. 53,000 words, how many pages is that?

 

[Elaine H]

Hiya
53,000 words is so far 110 pages of A4 size, I've still got a lot to add yet, and some other people's input, a few pages of photos from the last 15 years, and hopefully people's examples of auras, and of course, discrimination at work.
Keep you posted, and I am going to get it published if it's the last thing I ever do!

lol
Lainey x

 

[knothing]

I just thought of something that happens every time I go to lunch with others. Even with me being under control everybody that knows will not let me drive because I have Epilepsy and it is too risky for them. Saves me gas but the way some drive I don't know who is more at risk?!?

 

[Brent]

Discrimination occurs, but I believe it is far less common and impactful as supposed. Like many things, if you're looking for it and expecting it, you will find it.

I used to be the vice president of a web development firm and did all of the hiring. One day I interviewed a black woman (in a predominantly white company in a predominantly white city). She came into the interview with a big chip on her shoulder and made several references to race and gender (such as how hard it was getting a job as a black woman in this area). I can tell you, from her resume I was just about willing to hire her not having met her, and told her that. In fact, I tried to steer the conversation that direction (salary requirements, schedule, etc.) She just kept pointing out that the challenges she had as a black woman. I finally told her I wasn't interested in those challenges - that I was just trying to determine if she could do the job and work well with our team.

In the end I told her that I was not going to hire her. She went on a tirade about not hiring her because she was a black woman. I told her that it had nothing to do with that, but had everything to do with her attitude. She, of course, wouldn't hear it.

My point is that she was so sure that she would be discriminated against that she created an environment wherein she could find it - at least in her mind. My impression is that she was hiding behind it as an excuse to fail. As long as she was rejected because of race or gender, it wasn't her fault. In her case, it was only an issue because she made it an issue. She was definitely the only person in the room that cared that she was black and/or a woman.

I think that it is often the same way with disabilities. People are so constantly reminded of their health that they start to become defined by it. In their mind, it permeates every aspect of life. So, they don't know how to talk about life without talking about the disability.

I (as most of us) am constantly aware of my seizures. Yet, I have found that others treat me differently only if I point it out either through actions or words. I even always have my service dog with me, and I have found that if I just approach situations as if there is nothing out of the ordinary, others do the same. However, as soon as I make an issue out of, draw attention to it, act embarrassed by it, etc. - that's when people get uncomfortable and begin to treat me differently.

-Brent

 

[knothing]

I never did anything to point it out except have a tonic-clonic at work. You can't hide one of those when you have it in front of 60+ people. The rest occurred while at home but I still lose 3 days of work with physical pain and memory loss. In my job I have to make my work available for someone to take over. So everyday I prepare for what I hope never happens. It affects my work actions everyday and my new boss had to know so we could have a plan in place should a t-c occur.
It's like preparing for the unknown everyday. Which is not something I had ever done before my diagnoses. I have to accept the extra responsibility E brings to my life. I wish I didn't have epilepsy but I also wish I was a millionaire. I am pretty sure neither will happen so I live my life as such. Can't buy a Ferrari either way.

 

[Loopy Lou]

We have got to do something about this, people say oh there there, how awful, oh it shouldn't be happening, oh how dreadful, but the truth is. it is happening, it's the 21st Century, and people still think we are all going to fall over every five minutes and thrash about on the floor, foaming at the mouth!!! We have got to educate employers, and I for one will continue to raise awareness in the UK!!

My employers definately think that. I work with adults with learning disabilities, and i'm not even allowed to be left in the house with the clients on my own for even five minutes. Without meaning any disrespect to the three woman i work with, only one of them is physically able to get up and move around on her own, and she ALWAYS stays in the living room. I'm not going to damage them in any way in the event that i do have a seizure. Of course, i do understand the company's reasoning for that, but i think they're going overboard. Even if the other member of staff needs to go to the shop two doors down, i am not allowed to stay in the house on my own. Funny that i can work on my own when THEY need it though.

I've not had a daytime TC since about May as the other ones have been during the night. I'm very much made to feel like my managers are only "accomodating" me because they can't give me the sack. There is an awful lot of stuff which i won't go into at the moment because i'll be here all day lol.

In a previous job i'd often sit in on interviews and be asked my input on whether or not the person would be right for the job. If i picked someone who was obviously the right candidate but was disabled in any way, it was overturned by the manager, who obviously had the final word on everything.

People say that there's not allowed to be any discrimination in the workplace for any reason, and that it's illegal, but it's difficult to prove, and doesn't work that way.

 

[Elaine H]

I go for an interview with my head held high, I have never ever and will never, be ashamed to have epilepsy, I so love interviews, it always starts off with discussing the job that I have applied for, and my experience and ability to do the job. Then, the fun starts that's if I'm lucky enough to get a bloody interview in the first place!!
I usually start the subject off by saying,there is something I would just like to discuss with you, and I am somewhat duty bound to tell you about this, so that you can meet the criteria that must be adhered to, under the The Disability Discrimination Act 1995. I love to watch their faces when I mention the dreaded E word, believe me Brent, it is never me that makes an issue of having epilepsy, in fact I am quite proud to have been through the last 25 years of total crap in the workplace, and still have my head high. You say that if we make a big deal of it,others will react,or, if we look for discrimination we'll find it!!!! That is such a sweeping statement! I am as educated, capable, and able to work as anyone else out there,more so than a lot of them, but you try convincing employers that, all in my mind eh? Well, how come I've lost eight jobs because of my epilepsy, how come I've had the most disgusting things said to me, been called the most abhorrent names, and ridiculed? Asked to leave a job after two weeks, in case I had a seizure, and kicked a pregnant woman in the office causing her to lose her baby? Hmmm, maybe it's different over there? But this is why I have written the book, it is blatant discrimination, and should not be happening!

Best Wishes
LAINEY

 

[Cint]

Discrimination occurs, but I believe it is far less common and impactful as supposed. Like many things, if you're looking for it and expecting it, you will find it.

I think that it is often the same way with disabilities. People are so constantly reminded of their health that they start to become defined by it. In their mind, it permeates every aspect of life. So, they don't know how to talk about life without talking about the disability.

I wasn't looking for it, but it sure as h***l did find me.

I do not let epilepsy define me, but how can we not be constantly reminded when seizures occur so frequently? Or we have trouble concentrating, remembering, finding words, etc?

originally posted by Brent:

I (as most of us) am constantly aware of my seizures. Yet, I have found that others treat me differently only if I point it out either through actions or words. I even always have my service dog with me, and I have found that if I just approach situations as if there is nothing out of the ordinary, others do the same. However, as soon as I make an issue out of, draw attention to it, act embarrassed by it, etc. - that's when people get uncomfortable and begin to treat me differently.

I don't make an issue of my seizures and like to pretend there is nothing out of the ordinary, so don't make an issue of it. But to those who know I do have epilepsy and watch me like a hawk, they do treat me differently, as though I will break on every step I take. At times, if I am in deep thought about something, some will ask if I am okay, they think I am having a SP or CP. Others are the ones who often bring it up, not me.
Maybe that is because I have been seriously injured due to seizures.

 

[Brent]

It seems that some people took offense at my last post on this subject. I would like those people to carefully reread my post. If you were offended, I think this reenforces my point.

I started the post by plainly stating that discrimination occurs. But I do believe it is far less common and impactful as supposed. The rest of my posts talks mostly about some personal experiences and observations and a statement that I think "often" (not even "usually") applies to people with disabilities.

Everyone's experiences are different and I can't speak for everyone. I can only share my personal experiences and observations and what those suggest to me.

I have dealt with neurological issues most of my adult life. Believe me, I know it is easy to play the part of the victim. I decided a long time ago not to be a victim of my circumstances. All successes and failures are entirely my responsibility. If others treat me differently (and they sometimes do), that is their issue. I just continue forward. Am I ever discriminated against? Probably. I just don't feel the need to dwell on it. It is not my problem if I don't make it my problem, and I definitely don't let it get in my way.

I guess it is a bit of a hot button for me. I used to work in the ER, and I would run into people all the time who would say that they could not do such-and-such because of some condition, or that they couldn't get a job because of employment discrimination because of their disablity. These are often just excuses for failure or for not even trying. I don't need to go on with my list of disabilities and medical conditions, but if I allowed these to limit my life, I would never leave the house.

Lights and loud music are major triggers for me. Yet, right now I am at a huge jazz festival with my family. Last night I had a seizure during a concert and was unresponsive for several minutes and in a pretty deep postictal phase for the rest of the night. What did I do? I got some sleep, got up the next morning, and came back to the festival. Why? Because I want to. I'm going to be a little more careful, but I'm still here. I'm traveling with a large group who witnessed the seizure. Many are, of course, treating me differently today. So? Not my problem. I'm enjoying the festival.

Sorry for the vent, but like I said, this is a hot button topic for me.

-B

 

[knothing]

Great that you like Jazz and went no matter what....good for you. I can give examples of me not caring also. I know around here we all do our best to support each other in our struggles with Epilepsy and others. As far as people here being offended reinforcing your point goes you just don't get it. A person such as Elaine isn't upset at you calling her out because you didn't. She is not like that at all. What offends people is when your statement comes off as you being superior to us and arrogant to boot. As unintentional as it may be sometimes what we want to say is not what we said sometimes.

Venting is good for everyone and so is jazz.

 

[occb]

Acid jazz isn't good for everybody Gypsy jazz, however is.

Brent it's great that you're able to not let discrimination, or your condition get in your way, but for some people it's just not that simple. Not everybody is created equal physically, mentally, or emotionally. Not everybody has faith in their abilities, especially those who have never had anyone believe in them. I would hold off judging people until you've seen the world from their perspective.

Some of those you saw in the ER may have had extremely legitimate reasons for not being able to work, but, like many I have met who work in the medical field, you chose to see them as losers, instead of human beings in need of understanding and support. Compassion fatigue happens, but don't let it become your worldview -- you become another problem people have to battle against when you do.

 

[seizingbeauty]

I'm lucky with where I work now, however I have had a few unfortunate experiances in the workplace.
I was once told by a manager that his sister had E and had refused promotions because she "understood" that she was unable to handle the burdens that came with the workload and I should follow her example and gracefully accept that I would not be promoted. That did not end well!
At another place of business, I had a T/C was transported by ambulance, which I had told them repeatedly was against my wishes to the hospital. Because they made the call they paid the bill and fired me within a week due to "staff changes".
If you want more info feel free to PM me Elaine

 

[Brent]

Knothing: Don't mistake directness and matter-of-factness as arrogance. If you read that in, that is you. I chose my words carefully and you should read them carefully.

Occb: Do you mean that I should hold off on judging people ... like I should not believe I know a person's world view from a couple of short posts? Is that the kind of judgment to which you are referring? I wonder if you walked a mile in my shoes if you wouldn't understand where I am coming from instead of making snap judgments based on a gut reaction to a few words that offended your sensibilities.

Look, I don't care if anyone agrees with me or not on this point. The subject came up and I had a few thoughts on the matter based on my personal experiences. I'm sorry those don't jive with some others' views, but after 30 years of dealing with these sorts issues from every angle, my views are at least well-considered even if they disagree with others'.

My contention is not in addressing real issues where they occur. As I stated, there are real issues. My point is simply that it is quite easy to overgeneralize these real issues and overestimate their domain. For example, Occb has apparently had experiences with health care workers with compassion fatigue. Learning that I have worked in the health care field, she overgeneralized and assumed that was just like them.

Similarly, when we have a couple of bad experiences with discrimination, with say employers, then the next employer we deal with we tend to be more defensive. We tend to see discrimination even where it doesn't necessarily exist. This may be a hard pill to swallow, but the world is not out to get us just because we have epilepsy. The world is a tough place for everyone and we all have our advantages and disadvantages.

For example Elaine wrote:

I usually start the subject off by saying,there is something I would just like to discuss with you, and I am somewhat duty bound to tell you about this, so that you can meet the criteria that must be adhered to, under the The Disability Discrimination Act 1995. I love to watch their faces when I mention the dreaded E word [...]​

First of all Elaine, as you know, in the UK you are not legally obligated to tell the employer at all. The considerate thing to do is to wait until AFTER a job offer to disclose this (if at all). Why is that considerate? Because when you disclose this up front it puts the potential employer in an awkward position. Let them make employment decisions unbiased by your medical condition. When you disclose this during the interview, it makes it hard to do because they don't want to be accused of discrimination (as you do). If you do not disclose this, then there is no opportunity for discrimination. If, after a job offer, you disclose this information and they want to withdraw the offer for valid reasons, then they may do so, and everything is on the up-and-up. Could it be that you tell this to employers during the interview so that, if you don't get the job, it isn't your fault? (This is a rhetorical question. Of course, you will say that you do it because you feel duty-bound or something.)

I have done quite a bit of hiring over the years. I can tell you that if a person came in and threw that at me and started talking about the Disability Discrimination Act of 1995, I would be much less inclined to hire her - not because of the disability, but because I would feel like she came into the interview with a bit of a confrontational attitude. Somewhat like I was being accused of discrimination up front. I wouldn't like that, and I would look at the application and applicant much less favorably.

It's like walking into an interview and saying, "You know, you can't discriminate against be because I am a woman." This is equivalent to saying, "You are probably a sexist, but I know my rights, so watch your step." If you threw the DDA at me during an interview, I would perceive that as, "You probably discriminate against the disabled, but you'd better not because I know the law." This isn't a great impression to give at a job interview.

When I interview, I want the interviewer to perceive me as a competent and confident worker who is friendly and easy to get along with.

Most people that apply to a job do not get the job. This is a mathematical fact. Often, the most qualified applicant does not get the job. In fact, this might even usually be the case. The reason for this is simple. An employer wants to know if the candidate would make a good fit in the culture of the company. This is more important than the qualifications on paper. Give the employer the benefit of the doubt and let him/her make a decision based on your qualifications and personality without the potential for bias based on your medical condition. If you come into the interview throwing the DDA at the employer, this is a red flag that you could be trouble - not because of your disability, but because of your attitude about your disability.

And this is my point.

Quite honestly, very few people really care if we have epilepsy or not. They really don't. People do, however, respond noticeably to one's attitude about it. Epilepsy is not what we are. It is just something we have to deal with - like doing laundry, paying bills, etc. - just one more thing. It is a mistake to believe that our particular trials are any worse than anyone else's. Understanding this, there is no point in dwelling on them any more than there is in dwelling on our bills to pay. We just do what we need to deal with the it, and move on with life.

With this said, I am not going to participate in this forum anymore. I think it is not for me. So, I am going to take my own advice and move on with life.

-Brent

 

[knothing]

Elaine it looks like Brent really hijacked this thread. I would have no problem if you got someone to eliminate all the entries that spun this away from the main topic. Or you could even start a new thread.
In the advice of Brent we should just move on with this thread because it was obviously not for him.

 

[occb]

I did overgeneralize Brent, you're right and I am sorry for that. You have your hot-button topics, I have mine. It's unfortunate that what you said about the people you have seen in the ER has actually been said to my partner's face. He didn't become hopeless overnight -- it took decades of being ignored, dismissed, ridiculed, being given the wrong meds, and misdiagnosis after misdiagnosis to get him there.

Everybody acts and reacts in ways that makes sense to them, their lives and their experiences. Most people I've known have tried a variety of methods to get ahead in life. To then tell them that they are the sole authors of their misfortune is rarely accurate.


EDIT: I second Knothing.