Toxic people no longer welcome here…

For the sake of my mental health I have cut out certain people from my life over the past two years. It hasn’t been easy and at times it’s been the hardest thing that I have ever done. However, it is worth it. The decreased stress in my life from no longer having to actively deal with their issues and problems is beyond measure. If you’re not sure what I’m taking about Chelsea Jackson explains well what it means to have, and cut out, a toxic person in your life in her blog “Why it’s OK to cut toxic family members from your life”

So for anybody struggling with this issue let me reassure you that it gets easier with time and is extremely worth it in the end!

To be the best person you can be, means that you must look after yourself first and foremost. If you’re constantly engaging with a toxic person you can never be your best you as they are constanty dragging you down. Stand up for yourself and you will become the better mother, daughter, sister, wife, that you want to be.

Why labels, and getting the right labels, are important for some disabled people

I’ve always wondered what life would have been like if I had been raised as Deaf rather than mainstreamed with occasional accommodations for my “hearing loss” that were often more an afterthought than an actual accommodation.

More recently, as I’ve struggled so much with my health getting the right label has been of the utmost importance. Without a label at all, everything was a great deal harder. “Breathing difficulties’ sounds so innocuous.

Unfortunately what seems to be the right label, that of Reactive Airways Dysfunction Syndrome (RADS) and Hypersensitivity seem to be very much misunderstood.

However, knowing that that is what’s wrong with me personally has allowed me to push myself in respiratory rehab. much more than I would have done before I knew for sure. Until we’d ruled out a lot of other possibilities I was always scared to do much of anything just in case I made anything worse.

Fighting to breathe for over 6 months before gaining any relief was hard enough. I wasn’t willing to do anything that could make that come back or get any worse. I was already past the point at which I should have been hospitalised months ago. Thankfully, I did get relief with the help of an outstanding speech language pathologist and the continued support of my medical team of specialists and my GP.

However, today I read the best description I’ve ever read on why, as a disabled person, being labelled matters to me.

Sparrows and Penguins

I don’t know if it’s true for all disabled people, but for some of we often do identify by our disability rather than as a person with a disability. I’m not a woman who happens to be deaf. I am a deaf woman. Being deaf permeates every aspect of my life. It is core to my identity.

So like “Candidly Autistic” I’m proud to be a penguin. I might be a different kind of penguin than “Candidly Autistic” but there is relief in no longer trying to be a sparrow.

Online dating is an adventure in imagination!

A few weeks ago I mentioned that I was going to try out online dating. Well, here we are a few weeks later and I have to say that as long as you view it as entertainment it’s a fun waste of time.

I can’t believe how much people lie. I feel like House is actually right – “Everybody lies”

They lie about the most stupid things. Interestingly men and women seem to describe themselves very differently. Pictures of men who self-describe as ‘athletic’ and ‘average’ are self-described as ‘a few extra pounds’ by women with the same build.

An interesting research study could certainly be designed to look at why that might be.

Secondly men lie about their height. As a 6′ woman I’m well aware that many men are intimidated somehow by tall women so I pay attention to their height. What I don’t understand is how somebody thinks that they can describe themselves as 6’2″ when they’re barely 5’10”. Do they only date women who are 5′, who may not be able to tell the difference? Crazily enough they’ll often post pictures of themselves with backgrounds that make it quite clear that they’re nowhere near the height they mention. Of course, even if they manage to post a picture that doesn’t give it away meeting for the ubiquitous coffee soon gives the game away.

If you’re going to lie about your height what else are you lying about?

Marital status is an obvious one and most men give themselves away pretty quickly. I don’t understand why they don’t just join the sites that are designed specifically for people who want to cheat. Are they just lying to themselves?

Then there are the ones that hate judgment as they pass judgment on complete strangers, or who are grammar Nazi’s and can’t spell grammar correctly to begin with!

Also, since when did it become acceptable for the opening line in a conversation to be about whether or not you give blow jobs? Again, there are sites that are totally about sexual hook-ups, can’t you use those instead?

So for those of us that just want to find friends, and date a little, please let’s talk about the weather, the day, our work, our interests, places we’ve traveled to or would like to travel too.

I guess at the end of the day, it’s a cheap form of entertainment. I just came across a site that say’s that it’s different and really supports friends and dating rather than cheating and sex hook-ups. I’ll try it and report back in a few weeks.

In the meantime, the thing perhaps to keep in mind is that I’ll only use the free sites (having paid for the expensive ones in the past and found them no better) and the old adage seems to be true:

You get what you pay for!

 

Is everything possible or are there realistic limitations?

I participated in an interesting conversation today about whether or not everything really is possible, or if we would do better to accept our limitations. The original point being made is that while we tend to blame others for our own lack of growth, we tend to be the only thing standing in our way.

However, as a person with disabilities I wonder how realistic it is to say that everything is possible. When I mentioned this the Special Olympics were brought up as a model of how disabilities are not limitations, and how they inspire the non-disabled to push past the limitations they place on themselves. I’ve commented before on the issue of ‘inspiration porn‘ and how offensive that can be.

An example was then given of a recent video somebody had seen about a woman with cerebral palsy who was determined that she would walk. She was working with a personal trainer on her upper body strength to enable her to do so.

My issue with this example is that I’d like to know why she wanted to much to be able to walk. Was it her desire? Her intent? Or was she trying to fulfill the desires of others? The wish to be ‘normal’?

For many wheelchair users, a wheelchair becomes an extension of their body and represents freedom and independence. The only limitations being the physical ones of the built environment and thoughtlessness.

Dr. Stephen Hawking has been quoted as saying “Obviously, because of my disability, I need assistance. But I have always tried to overcome the limitations of my condition and lead as full a life as possible. I have traveled the world, from the Antarctic to zero gravity. (Pause.) Perhaps one day I will go into space.”

For somebody with his finances and reputation I suspect that it is much easier to overcome those limitations than it is for John Doe who also has ALS but lives on disability and is not well-known.

So is it fair to be hopeful that all things are possible or should we accept our limitations?

I’m not sure.

I think that if we truly believe that anything is possible that that’s when we do achieve the impossible. That we do place limitations on our selves that aren’t real or needed.

However, if I lived in the hope that all is possible would I deal with the reality of my today or would I always be living for “if” and “when”?

I think that ultimately I have to accept that today I have limitations. They may not be the same tomorrow or next year. There are things I may be able to do to change those limitations but realistically if I refuse to accept my current limitations I literally place my life at risk.

Somehow I have to find the balance between living with the hope that one day I won’t be as restricted and limited as I am now in what I can do due to allergies and hypersensitivity and also accepting those same limitations today.

Is everything possible? Yes, but maybe not today.

When you don’t know what to say, say that; don’t just say nothing!

One of the things that I’ve noticed over the last year is that people seem to have a real problem with not knowing what to say when somebody is in an extreme situation. Rather than say the wrong thing, they say nothing at all.

I assume that it’s a variation on the old adage that if you have nothing nice to say, don’t say anything at all. However, as the recipient of a lot of silence over the past year, from people I’d previously thought of as friends I’d have to say that it hurts.

As I start to re-enter the world a little, even heavily mediated by technology, I’m finding that many people just didn’t know what to say when they heard about my precarious health. So while they were thinking about me, and concerned; willing to help where possible, they still just said nothing.

So from my perspective, they didn’t care. They weren’t interested in me or what was happening to me. Their own life and situation was much more important than taking a few seconds to drop me an email now and then. It hurt.

So for what it’s worth – if you know somebody in a difficult situation and you don’t know what to say to somebody in response, may I suggest that you say just that.

Let them know that you are thinking of them. That you care.

By being silent you’re making a statement. It feels as so you don’t care enough to make an effort to say anything, even the wrong thing.

When people are in extreme situations; especially one like mine which is extremely isolating please take the time to just say hello now and then. It takes next to no time for you to do but means the world to those fighting such health battles.

There is one caveat to this recommendation of course. If you’ve been asked to not contact the person, that’s a different issue. In that case I strongly suggest that you do do as asked. People don’t ask for no contact with others lightly. Disrespecting such a request is incredibly arrogant and narcissistic.

I believe that people know what they can handle and what they can’t. Unless you’ve been asked not to contact somebody in a difficult situation… take a moment, let them know that you care.

What a fantastic date to return to work: even in a very limited fashion… International Women’s Day

So today is March 8th, 2017 and the day that I officially start my transition plan to return to work. It’s very limited at this point and I’ll be working from home to accommodate my hypersensitivity and anaphylaxis. But it’s a start.

It’s been almost exactly 10 months since the anaphylaxis reaction that triggered my Reactive Airways Dysfunction (RADS) and all the complications that then ensued. 9 months since I was officially signed off work and 3 months since I was placed on Long Term Disability insurance.

For much of the first 6 months I would never have believed that this day would ever come. I was literally fighting to breathe each and every day. We were discussing second opinions and complex surgery out-of-town. Thankfully, a last straw grasped at turned out to make all the difference and seeing a speech language pathologist and getting off oral steroids helped me turn a corner.

I also finally start the lung rehabilitation program tomorrow. So over the next 10 weeks I will gradually increase my work hours as I complete this program. The hope is that by the end of the rehab program that I’ll have enough stamina to return to full-time hours, most likely still working from home for the foreseeable future.

Unfortunately anaphylaxis reactions don’t tend to get better with time, but rather worse. There’s no way to test it though without exposure which seems a pretty drastic way of finding out if the reaction is still deadly or not so I think I’ll miss out on that option. Especially as minimal exposure even to just citrus scents are triggering extremely severe asthma attacks and hive reactions.

As I mentioned recently, my employer is doing a fantastic job of working with me to work out disability accommodations. Already this week, with the help of the Information Technology (IT) department, we’ve been able to work out how to facilitate my virtually attending some meetings on campus later this week mediated through WebEx.

There remain a number of other issues to resolve but it seems like everybody is committed to working it out. Coincidentally almost all involved in this process are women. From the President of the University to my doctor and many others in between.

So today as a member of the workforce once more I’m delighted to wish you a Happy International Women’s Day.

Further I hope that today, that more boundaries are broken down and that women from all walks of life are celebrated. #she celebrates the spirit of women and their logo is racially and age inclusive however it doesn’t obviously include the disabled woman. Which of course, could be like other aspects of womanhood and invisible on the outside. However, experience suggests that the disabled remain an ignored minority so I ask you to think about all women today, young and old, tall or short, able-bodied of disabled in whatever way and celebrate them all.

For history has shown that it is women that need to empower women, and not to rely on men to do so. Let’s not forget the suffragette movement which worked so hard to give women the right to vote.

Exercise that right. Vote wherever and whenever you can. Your voice counts!

Happy Women’s Day!

When is disability accommodation not accommodation?

In Ontario under Human Rights legislation, and the Accessibility for Ontarians with Disabilities Act (AODA), I can’t be discriminated against due to my disabilities. However, there is this wonderful phrase ‘undue hardship’ that comes into play when requesting disability accommodation.

Recently an Ontario school board declared that it would be an ‘undue hardship’ to accommodate a child’s service dog, in the child’s classroom, that is trained to help the child with their autism. Many people disagree and the case continues.

However, the issue of ‘undue hardship’ is very complex as this case example demonstrates well. The key message in this example that in an employer/employee situation you must engage in the process and the solution may not be perfect, and doesn’t have to be.

I’m currently engaged in this process with my employer and will give them all credit. They have come up with a transition plan that works. It takes into account my limitations (that I can’t be around scents, citrus or latex at all and currently have limited stamina) while also giving everybody time to try to work out a longer term solution to the issues concerned.

In my case my deafness is complicating issues. In most cases, if somebody had to work from home they could teleconference in to meetings and participate in that way. Unfortunately even with my highly amplified phones I still need additional cues – faces. So we’re looking at ways of setting up video conferencing through Skype, or similar, that will be easy to use and low to no cost.

My employer is working hard at accommodating me but the issue of undue hardship is still real. The problem is that it’s poorly defined. Realistically it’s pretty easy to state that expecting an entire university, that also houses a gym with public membership, to go citrus, latex and scent free would be an undue hardship.

Yet some schools do go entirely peanut free to accommodate children with anaphylaxis.

So where is the line drawn?

Is it because my primary allergen (citrus) is so unique and also so prevalent in everything that makes it just unrealistic to accommodate? I’ll admit, I didn’t expect my employer to even try accommodating my anaphylaxis in terms of making the campus safe, having recently seen how hard it was for a hospital to do so.

The next issue is the practicality of accommodation. It’s one thing to say that we can use Skype or similar to video-conference meetings so that I can attend and participate, but doing so is another issue.

I happen to know that this works for me as I use a similar product, WebEx with my colleagues at the Northern Ontario School of Medicine (NOSM) frequently. However, NOSM is a distributed program. They video-conference classes and meetings on a daily basis. It is their way of doing business. So my needing to see faces isn’t an issue; they’re provided for me for the most part anyway. Sometimes I have difficulties with people just teleconferencing in and then it depends on the chair of the meeting. In many cases, they’re excellent and repeat what’s been said for everybody to hear anyway so I can follow the repeat.

So setting aside my employer for a moment, who are doing an incredible job of working with me, my problem comes when I ask for accommodation in other contexts. Not only do I have to explain my disabilities in at least general detail (which I shouldn’t have to), and ask for what I need but often they then expect me to resolve the issue myself.

Let’s be clear – if I could resolve the issue myself I would have already done so. When I found myself unable to talk for those NOSM meetings I contacted a colleague and we texted during the meeting and they voiced my thoughts for me as needed. It was very helpful when they needed a committee vote for example; rather than my having to give apologies.

I think it all comes down to the way that people respond. I’m learning to ask for accommodation, and in fact to even demand it when necessary such as that the majority of my health care providers are now using email to schedule appointments with me rather than insisting on using the telephone. A win!

What’s hard to deal with though is when the request for accommodation isn’t really a hardship; in fact the accommodation takes minimal effort for the person who needs to provide it but they act as so it’s an unbearable amount of extra work.

Those people make my life hard. It’s hard not to feel like a burden when that’s the reaction. It’s hard not to want to just give up and stop fighting. I’m already fighting my own body each and every day. Please don’t make me have to fight you too just to get you to treat me with a little compassion.

So when is disability accommodation not accommodation? When it’s done without compassion and professionalism.

I don’t want or need your pity.

I do need you to listen to me and to work with me. I have solutions, I know what works for me best and what would have least impact on you, or others.

Disability accommodation is not about placing undue hardship on the able, it’s about providing equity and liberation for those already fighting wars you have no idea even exist.

Please remember to be compassionate whenever anybody requests  an accommodation. You have no idea how hard that was for most of us to even ask for!