Disability And Inclusion Research

“There are strong arguments for encouraging disabled people to become designers and for finding mechanisms to support architects who acquire disabilities during their working lives. We feel this is an important step towards creating a climate of success for disabled designers in the UK.”
-Sandra Manley of the School of the Natural and Built Environment at UWE.

The Royal Institute of British Architects (RIBA) and the University of the West of England (UWE) have launched a research study into disability and inclusion in architecture.

This is the first time that a detailed piece of research has been commissioned into this subject. The year-long study will seek to identify case studies of good practice in the profession, which facilitate equal opportunities for disabled people as entrants, students and practitioners. These case studies will act as a resource for future work, as well as raising the profile of disabled architects and celebrating existing successes.

RIBA and UWE hope that the questionnaire will be completed by the following groups of disabled people;

  • architects,
  • students of architecture,
  • people who embarked on an architecture course or career in architecture but did not complete,
  • people who considered a career in architecture, but were deterred from pursuing this ambition.

The researchers are also interested in hearing from anyone who is interested in the research and considers that they can make a useful contribution.

Further details about the research and the questionnaire are available on the following website: https://environment7.uwe.ac.uk/projects/riba.

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Forecast: Rain, Followed By Sun

Dark CloudRheumatoid Arthritis Guy realizes that, once again, he is depressed.

I’ve been through this before many times, but I have never admitted it so publicly – either to myself or to others.

Before now, I always interpreted my depression as a sign of failure. One of my most frequent thoughts, once I reached this state, was that I should have done something earlier in order to prevent myself from reaching this low point.

I now know, though, that periods of depression are a normal part of living with rheumatoid arthritis. As much as I try to smile and make myself laugh, sometimes the tears take over – whether I like it or not. But I continue to laugh. Even a half-hearted laugh is better than no laugh at all.

My pain has once again reached new highs. My ankles and knees are weaker than ever. My hands are flaring out of control. Every step I take with my crutches is excruciating, and visions of a wheelchairs dance in my head. My thoughts become clouded, and my brain feels like one big marquee up in my head that is blinking “Don’t move!” I preemptively cringe the second before any type of movement.

My left elbow locked up when I am at physical therapy yesterday. My therapist stopped working on my hands and immediately moved to try to resolve this new problem. I can either laugh or cry. I end up with “I guess I won’t be playing tennis tomorrow.” The humor doesn’t  cover up my pain, but it does help to lighten up the situation.

The sooner that I admit that I have gone into depression, the sooner I can go through this cycle and come out of depression. I know that my depression must heal on its own time. But at least I am on the right path.

At moments it feels like I am on the edge of a cliff, where the slightest wrong turn will send me down an even deeper spiral. Even though I know I have an amazing support network, the feelings of loneliness are overwhelming. I have no doubt that many helping hands will be offered – but deep down inside I know that I, and only I, can take the steps that are required to move forward.

I try to keep my mind occupied. I finish reading that book that I have been reading for a while. When listening to music on my iPod, I skip through any songs that make me feel any more wispy that I already am. During the evening I go out to watch the opening movie of a local film festival – luckily it’s a comedy (and a good one!)  I laugh out loud, and for just a little over an hour my mind is in a happy place.

But I get back home, and the pain and depression is still there. Thoughts of “this is never going to end” creep back into my mind. I remove my ankle braces, my knee braces, my elbow braces, and my wrist braces. (One day I’m going to have a cape made, so that my RA Guy outfit is complete.)

I am scared. But way in the back of my mind, I know that I am okay. I put on my blinders to any depressing thoughts, but I still allow myself to see the actual depression. I am happy that I finally understand the difference between these two things.

My depression is not a weakness. It is not something bad. It is not something that I am ashamed of. It is not something I could have stopped. It is a natural response to the tremendous challenge that my body, mind, and spirit are going through at the moment.

Writing in my blog is one of the beacons that allows me to keep my balance. Putting my words down on paper helps, and throughout the day I often return often to re-read my own words. It helps me connect with myself, and to get through the pain.

My eyes burn, not because of crying. but because the amount of tears that my eye ducts produce has diminished drastically – another one of those weird symptoms of rheumatoid arthritis. I add artificial tears throughout the day. Almost if by magic, they later turn into real tears.

I know that this too will pass. I won’t wallow in my depression but I will allow myself to feel what it needs. Even though my depression is sort of like an uninvited guest, I will still try to be the best possible host.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

*****

Update: Today, Jules at An Attitude of Gratitude also wrote a wonderfully eloquent post on the topic of depression.

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Out Of Joint, Pt. 2

Out of JointA little over a month ago Rheumatoid Arthritis Guy wrote about his diagnosis of rheumatoid arthritis, and the subsequent cycles of acceptance and denial.

The one thing that tied together all of these episodes was Out of Joint: A Private and Public Story of Arthritis, a personal story of living with rheumatoid arthritis by Mary Felstiner.

I have read this book many times, and each time it has affected me differently.

(The full post can be read here.)

On the day I published that post, I sent an email message to Ms. Felstiner. I wanted to thank her, and to let her know how much her book had helped me and continues to help me.

Last night I was happy to receive a response from Ms Felstiner. She told me that I was welcome to post her message on my blog. Her email follows.

Dear RA Guy,

I can’t believe I didn’t answer you immediately. Just this morning I was clearing up some old e-mails and students at the end of the quarter, and clearly yours got lost in the midst of theirs. I apologize!

Your posting about “Out of Joint” brought me close to tears.

The experience you had was so common, so like mine, and so unrecognized. I can’t tell you how grateful I am that you opened my book, but much more important, that you are taking responsibility for reaching out to others, that you’re making your wonderful cartoons, and that you’re serving as a kind of clearing house for people to tell their stories.

I can’t imagine anything more important.

So I thank you, profoundly. I should say “you’re welcome” for your thanks, but really it goes the other way. (And you’re welcome to post this if you like).

Thank you for writing.

Thank you for reading.

All the best,
Mary

Ms. Felstiner, thank you for your kind words.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Fresh Off The Press

Pens and Needles
Helen just launched her RA blog earlier today. 25 years old with Rheumatoid Arthritis, Scoliosis and Hypertrophic Cardiomyopathy, Helen lives in Canada, works in media and likes to procrastinate. (Her words, not mine!)

ArthriticJoints.com
This blog has been live since the start of this year. It’s a wonderful resource for many different types of information related to rheumatoid arthritis, from product reviews to summer camps to computer keyboards. If you haven’t already, be sure to take a look!

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Defining Remission

Courage doesn’t always roar. Sometimes courage is that quiet voice at the end of the day saying, “I will try again tomorrow.” -Mary Anne Radmacher

Remission Accomplished

Rheumatoid Arthritis Guy has recently been thinking a lot about the concept of remission. Many of us are familiar with the most common definition of remission. According to the Oxford English Dictionary, remission is “a decrease or subsidence (esp. a temporary one) in the violence of a disease or pain.”

If you ask a person living with rheumatoid arthritis (or a rheumatologist) what the goal of any treatment plan is, I think chances are that you would get one of two answers. The first response would be to slow down the progression of the disease and to slow down the damage to the joints. The second response (which I find myself longing for at times) would be remission.

Remission. Hibernation. Going on RA vacation. Taking a break. Call it whatever you want, the notion of having a period where there is no rheumatoid arthritis activity often sits out there on the horizon, sort of like the pot at the end of the rainbow. In my five years of living with rheumatoid arthritis, I did have almost one complete year which I could refer to as being a solid period of remission.

Yesterday, as I sat in the back of the taxi on my way home from my physical therapy session, I realized how incredibly calm I was. This surprised me, because the pain and inflammation in my feet, ankles, and knees was worse than ever. I require so many different treatments on different joints, that both me and the physical therapist have our own routine now. Lift that leg, bend this knee, extend that foot, give me the left hand, show my your right elbow. As with any dance, most of it goes unspoken.

In order to get the most out of my session, we often do up to three different treatments at the same time. After attaching the electrodes on my knees, this treatment can pretty much run attended for 15-30 minutes. During this time, she does ultrasound therapy on my feet. And in order to squeeze in that one last treatment, I do low-laser therapy on my hands. Stop, and rotate everything up to the next set of joints.

As I continued on my ride home, I begin to think – this fluidity doesn’t take place only at the doctor’s office. In my daily life at home, I have become quite used to this rheumatoid arthritis dance.

Wake up in the morning, evaluate body. Decide if going to yoga this morning will help or hurt me. Take my morning pills. Get bathed and get dressed – incorporating any modification necessary to make the routine a little easier. Sit down for a few minutes. Rest my mind. Rest my joints.

Monday? Acupuncture and physical therapy. Tuesday? Yoga and psychologist. Wednesday? Free morning (for lab work, picking up medicines, or anything else that might come up – sometimes even sleeping in, the best treatment of them all!) and physical therapy. Thursday? Yoga and acupuncture. Friday? Yoga and physical therapy.

During the evenings, I have a whole other list of possible activities. Meditate. Write my positive affirmations. Listen to relaxing music. Take my fish oil.

A month into this routine, I felt a little overwhelmed with my “new” life.

Two months in, I now find myself completely at ease. On top of this, I feel very fortunate that I able to dedicate so much time and effort to my health care.

But during the past ten days, my symptoms took a big downhill turn. Shouldn’t I be getting better, not worse? But by now, I know that RA does not always make sense, and that it can be confusing enough to begin with.

So instead of worrying, I add another tool to my chest. Yesterday I started an elimination diet.  I hope to both increase my energy levels and determine if something that I am consuming might be aggravating my RA.

And it all seems so normal. Sunday night I received a few messages asking how my weekend went. I sent out the following tweet: “Incredible amount of pain this weekend…but you know what? I’m okay with this. Never thought I would be able to say such a thing.”

As the taxi neared my house, I begin to wonder if there were any other definitions of remission. As soon as I got back into my home office, I pulled out my trusty (compact) OED. Low and behold, the fifth entry showed: “Relaxation, lessening of tension.”

So, I am pleased to announce that, even though my physical pain and inflammation continues to flare, I have indeed reached a point of remission.

Mental remission, that is.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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