As a professional patient with cystic fibrosis (CF), I have a lot of experience dealing with health professionals who see me as a medical record number, make decisions for me, and tell me what to do. Although I was attracted to a career in healthcare, I knew I didn't want to be that kind of health professional. Instead, I wanted to connect with people, find out what's important to them, provide tailored options, and help them make the best decision for their life. I wanted a career with that job description. I wanted to be a genetic counsellor (GC).
I'm pleased to say that I now work as a genetic counsellor!
What are the strengths and challenges of being a genetic counsellor with CF? What do I need for equity and inclusion in the profession? Let's talk about it!
CF has fostered strengths
From a genetic counselling perspective, I am more empathic and patient-centred than what I might have been without an experience of CF. I often strongly relate to what my patients are going through, and am driven to give them the best possible care - the level of healthcare I would like to receive from others.
Career challenges
GCs know what CF is of course. However, GCs usually don't have lived experience of having, or caring for someone, with CF. The toll of my illness is universally under appreciated by my colleagues, and the professional barriers I experience because of my illness are generally inadequately addressed.
Treatment burden. For me to stay as well as possible I need to do two hours of treatment daily. This is the minimum amount of required treatment and it's non-negotiable. If I reduce or skip my treatment, I become unwell. If I become unwell regularly, I reduce my life expectancy. It's a simple but brutal equation.
The burden of treatment impacts all aspects of my life. This includes the time I have available for any type of professional development outside of my contracted work hours.
Invisible illness. You can't tell I have a life limiting chronic illness from my appearance. There are few clues that what is expected of a typical person may not be achievable for me at all, in the same way, or the same timeframe. My abilities can be overestimated and under supported.
Lack of equity and inclusion. Within the profession I have often heard statements like: "If I can do such-and-such then everyone else should be able to do such-and-such too!" Not so. What is possible for some is not possible for all - and that's ok. We have different strengths and weaknesses, barriers and facilitators in our lives - whether we are disabled or abled. As a profession, we seem to have forgotten this, we don't celebrate it, and it's rare that support is tailored to individuals to provide equity of opportunity.
When we treat everyone equally, we treat everyone the same, but when we treat everyone equitably, we focus on individualistic needs.
[Quote from "How to define diversity, equity, and inclusion at work".
You can read the article here.]
If we don't foster equity then disabled, chronically ill and neurodiverse GCs are not able to be included at all, or in a substantive way. Accessibility and accommodations are therefore not seen as essential which undermines equity and the cycle begins again.
It's, you know, it's microaggressions writ large, it's, "You don't belong," it's all of the messages that they receive that they're not cut out for it. And it's astonishing to me that a culture that supposedly is tasked with caring for the vulnerable and the sick and the injured, would shun so completely the notion that the human body is fallible, even amongst ourselves, it’s so fascinating how much we've kept that at arm's length.
[Quote from Dr Rana Awdish on episode 32 of the Docs With Disabilities podcast.
You can listen or read the transcript here.]
Career non-challenges
Providing genetic counselling for CF. I'm a white, cis het, female, young-ish, middle-class genetic counsellor. I don't get asked if I'm capable of providing genetic counselling to people who are also white, cis het, female, young-ish or middle-class. I do get asked if I am capable of providing genetic counselling about CF. Spoiler alert: I am (more than) capable. Why does this aspect of my identity make others question how well I can do my job when other aspects don't?
Equity and inclusion opportunities
Accessibility and accommodations are necessary for equity and inclusion.
I couldn't do my undergraduate degree full-time, but I could do it part-time.
I couldn't do some university exams at the same time as my peers due to an unexpected admission, but I could do the exams at a re-scheduled date.
I can't travel to an overseas conference, but I can attend virtually.
I can't always walk up stairs with colleagues, but we can catch an elevator together.
I can't see patients in the NICU in the middle of a global pandemic, but I can use Telehealth.
I can't produce the amount of work in the timeframe required for the Australian certification process, but I can follow a personalised plan that takes my particular life circumstances into account.
Accommodations are not a favour. They are a right and a mechanism to avoid discrimination. Accommodations need to be provided when requested and they should be explicitly advertised to students and staff to facilitate uptake and foster equity.
[Quote from author of this blog post.]
A seat at the table is necessary for inclusion. GCs with disability, chronic illness and neurodiversity exist. We are more numerous than what it appears at first glance. It's really hard for people without disability, chronic illness or who are neurotypical to identify challenges and solutions. Include us! We can help the profession to be more diverse, equitable and inclusive which in turn helps us to thrive and excel in our roles.
The future
I'm looking forward to a future where GCs with disability, chronic illness and neurodiversity are numerous, celebrated, identifiable, adequately supported, involved in decision-making and mentors. We have so much to offer!
If you would like to have your experience showcased on the
Dare To Be Aware blog please email: awaredare@gmail.com.
You can be identified or de-identified according to your preference.
NB: Person-first and identity-first language are both used in this blog post in recognition that people will have different preferences.
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