Being pregnant and disabled seems to throw near enough everyone. If it’s not people making assumptions and comments related to becoming a disabled parent (see our blog post on that here), it’s the lack of access to maternity care. Society can’t get to grips with the simple fact that disabled people have lives, have relationships, create families, and need the same access to services as able-bodied people!
Healthcare settings, in general, are not the most accessible places for disabled people. For example, wheelchair users requiring cervical or other screenings often can’t get onto the beds or close to the machines and sometimes can’t even get into the room they need to go in. In addition, sighted guidance training doesn’t always seem to have been provided to staff, and thanks to Covid-19, masks mean that those who rely on lip-reading are often left not knowing what’s going on. This is just the tip of the iceberg of access problems.
For me, in maternity specifically, the access issues have recently become a nightmare. Whilst the antenatal clinic is relatively accessible at my local hospital for wheelchair users, the same cannot be said for labour triage upstairs! Right from the beginning, my midwife has made as many of my appointments as possible with her home visits. Not just because of my vulnerability status regarding Covid-19, but because my home is set up for me. I can transfer out of my chair onto the sofa or the bed when it’s time to check little one’s positioning and listen to their heartbeat, and I also feel much more at ease because hospitals and I have a pretty bad history.
At my local hospital, labour triage has two assessment rooms. Both rooms are so small that as a wheelchair user, I’m unable to move around in either. It also means I can’t transfer onto the bed on a good day, can’t be hoisted in these rooms on a bad day, and to top it off, if I need monitoring, then it’s done with me sitting in my wheelchair, which can mean that the CTG doesn’t always meet criteria. If I need other examinations for whatever reason, the only option available is to wait for one of the larger delivery rooms to free up. The problems don’t stop there either, as in labour triage there’s no disabled toilet. It’s a case of me making sure I take a urine sample in with me when I go in, or I have to go downstairs to the disabled toilet to do one. It also means that if I need to catheterise whilst upstairs, we then have to go downstairs to do that. So far, in the few visits that I’ve had for various scares, I’ve found two delivery rooms that have toilets I can use as they have grab rails in, although on one of these I’ll still need help to transfer as the grab rails aren’t on both sides.
My access needs have become a bigger worry as the delivery day nears. Will I end up being a burden on already overstretched staff when I need help in the times Alex or other family coming to visit us aren’t there? I’ve already been made to feel like a burden once when a registrar didn’t understand my needs. If it wasn’t for the fact that my own midwife was with me when it happened, I probably would have broken down even more than I did. At 33 weeks, when we were worried I may have gone into preterm labour, I was seen in one of those tiny triage rooms. The registrar was adamant that they could help me onto a bed that both my midwife and I knew I wouldn’t be able to safely get on without being hoisted. In the end, my lovely midwife said to me, ‘I’m going to go and speak with the others to get you into one of the delivery rooms because there’s no way we’re risking a dislocation!’ Having that kind of advocacy during one of my most vulnerable moments has been invaluable.
The lack of access around the hospital is such a worry that I’m dreading the postnatal period whilst in hospital. Will there be enough room around the bed for my chair and my case, especially with little one’s cot to contend with as well. Will I be able to use the bathrooms and toilet on the postnatal ward? If I need to be hoisted, will there be room for that? Thankfully, I have such a great midwife that she’s already thinking ahead to that period, even to the point of planning to ask for me to have a side room which will mean more space. Anyone who’s given birth in a hospital knows that side rooms on postnatal are a rarity, so if we do manage to get one, I’ll be even happier. With my medication having a sedative effect, I know that it’s going to be a tough ask, but my access needs are just as important as other needs in the bigger picture.
Many won’t realise this, but July marks Disability Pride month. If you didn’t know that, it’s likely because you haven’t seen the equivalent of rainbow washing that companies perform during Pride month in June. You see, companies don’t seem to bother with disabled folk; I’ve seen hardly any talk about how they’re helping disabled people or making their services more accessible. Our communities’ struggles aren’t for one month of the year, they are every single day, and that’s why active allyship and advocacy for disabled people and their needs is so important! As I’ve said in this post, how my midwife advocates for my needs is invaluable. Not only to me but to Alex as well because he is also worried about my needs not being met if he’s not with me in hospital for whatever reason. After little one has arrived, I’ll be doing a post about how having almost one-to-one care throughout the pregnancy has really helped me and why I believe everyone should have access to that level of support if they need it!