We’re doing something a little bit different! We’re taking a shot at making video along with the podcast! You can watch this episode on our YouTube channel, or as always, you can listen in your favorite podcast app.
This episode has two parts. We’re first going to feature a short talk Jennifer gave at the Canadian Caregiving Summit in Ottawa a few weeks ago, which was specifically focused on her experiences as an extreme caregiver, trying to earn a living.
After that short recording – which is about 10 minutes – tune in to Jennifer and Emily’s conversation about advocacy, policy, and choice.
In this episode:
00:00 What to expect in this episode
01:20 Jennifer’s experience as an extreme caregiver
02:20 Right to flourish, caregiving through a bioethics lens
03:34 Caregiving and choice
04:38 Disability is seen as a personal or family tragedy
05:18 Accessing and managing support can be burdensome
06:09 Extreme caregiving has an opportunity cost
06:51 Financial precarity and gender
08:09 What does society prefer to support?
08:50 Caregiving as unpaid labour keeps caregivers in financial dependency
10:01 Policy considerations and conclusion of talk
11:11 Jennifer and Emily have a candid discussion!
15:18 Advocacy vs. organizational agendas
16:59 Caregiving can be fulfilling and also has a cost. Extreme caregiving is rarely a choice
18:47 How do we differentiate between regular parenting/caregiving and ‘extreme’ caregiving?
27:06 The amount of work that goes into managing and administering everything that goes along with extreme caregiving
29:04 Putting some choice back into challenging circumstances
35:35 Moral arguments for policy makers
36:53 Caregiving policies potentially impact everyone
40:29 Navigating care responsibilities as a family or partnership
44:53 “Performing” for therapists
46:39 Shared decision-making and patient/family priorities
49:18 Jen and Emily reflect on how little they’ve talked about Jennifer’s experiences with Owen
51:14 Jen and Emily acknowledge that caregivers don’t all have the same opportunities, experiences, or perceptions