The Spinal Muscular Atrophy Podcast with Kevin Schaefer · SMA News Today

#148: Ashley Fox and Madeline Engel discuss friendship and caregiving

·45 min·2 clips

Madeline says her first SMA conference changed her view of disability, community, and ableism.

1. The Spinal Muscular Atrophy Podcast with Kevin Schaefer focuses this episode on Ashley Fox, Madeline Engel, and their friendship-caregiving relationship. 2. Kevin Schaefer hosts, Ashley Fox appears as a returning guest with SMA Type 2, and Madeline Engel joins as Ashley’s longtime friend and caregiver. 3. The episode asks how friendship can become caregiving without losing honesty, trust, or care on either side. 4. Ashley says she completed a master’s in sports and performance psychology from California Baptist University and is looking for work in adaptive athletics and injury rehab. 5. Madeline says she is pursuing a master’s in macro social work, plans to found a nonprofit after graduation, and wants licensure so she can do therapy. 6. Madeline traces her nonprofit idea to life experiences and to men in abusive relationships who were not recognized as victims or survivors of intimate partner violence. 7. Ashley and Madeline met in a large developmental psychology class at UCSB, where they both sat in the front row and worked on group projects together. 8. Ashley says a Friendsgiving gathering and a shared connection through the same caregiver helped the friendship move outside class. 9. Ashley says her caregiver shortage after COVID created a crisis where she might have had to drop out of UCSD if she could not hire more help. 10. Madeline says she became one of Ashley’s main caregivers quickly, first helping with smaller tasks and then with more intimate daily needs. 11. Madeline says learning Ashley’s needs began with simple help like taking a notebook out of a backpack and gradually moved into more complex care. 12. Ashley says she had been taught she was “too much,” which made it hard to accept care from a friend without fearing she would lose the friendship. 13. Ashley says Madeline helped her stop apologizing for basic needs like using the bathroom or wanting a snack soon after eating. 14. Both say they still use direct check-ins about stress, annoyance, and support so resentment does not build. 15. Madeline says she needed education about the disabled community, including simple questions like whether she should stand or get lower when talking to Ashley. 16. Madeline says Ashley’s openness and willingness to explain things made it possible for her to unlearn internalized ableism. 17. Madeline says attending SMA conferences with Ashley changed her perspective because she met many people with different needs, experiences, and mobility aids. 18. Ashley says conferences felt safer when she brought people she trusted, because she wanted allies who were willing to learn and respect the space. 19. The episode has an interview style, with Kevin guiding the conversation through personal stories, practical caregiving advice, and conference reflections. 20. Listeners who want disability-community friendship and caregiving insight will get a lot from this; listeners wanting a short clinical overview may skip it.

As heard by us

A careful look at how friendship changes when care becomes part of it.

Ashley Fox and Madeline Engel talk through a friendship that has had to make room for caregiving, burnout, honesty, and repeated check-ins. The episode works because it refuses to flatten that arrangement into an easy lesson.

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Why you'd press play

You want a real look at friendship when caregiving is part of the deal.

Read the full recommendation in PlayNext →

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