Note, this is primarily going to be about the experience of cis women as I know more about this right now and I feel that trans disabled people are likely to have some extra barriers. And obviously there are many different disabilities and this post is going to focus on physical disabilities. It is also important to note that some people have had great experiences, but it is a postcode lottery.
You would think that medical buildings would be one of the most accessible places in the UK, but the reality is shocking. Being in hospital with a physical disability was horrendous, but that’s for another post, this one is about sexual health services.
A recent report from Jo’s Cervical Cancer Trust found that:
- 88% said it is harder for women with physical disabilities to attend or access cervical screening
- 63% said that they have been unable to attend cervical screening because of their disability
- 49% said that they have chosen not to attend cervical screening in the past for reasons such as previous bad experiences related to their disability or worries about how people might react.
- 45% said that they felt their needs have been forgotten and 38% said that they feel the doctors or nurses don’t take their needs seriously
This is not ok. Sexual health matters. And it’s not just about cervical screening. The issues at play with the smear test are also often found in STI testing. All of this is putting women with disabilities in danger.
In terms of screening for breast cancer, the NHS website says:
“Mammography is a procedure that’s technically difficult. You have to be carefully positioned on the X-ray machine, and must be able to hold the position for several seconds.
This may not be possible for women with limited mobility in their upper bodies or who are unable to support their upper bodies unaided.
If you have a disability, your breast screening unit should be able to advise you if screening is technically possible, and on the most appropriate place to be screened. This will usually be at a static unit.
If a mammogram isn’t technically possible, you should still remain in the call and recall programme, as any increased mobility at a future date may make screening easier.
If a woman can’t be screened, she should be advised on breast awareness.”
And whilst I understand the physical limitations, it doesn’t feel like enough. In the US, between 2001 and 2005, 75.4% of women without disabilities went for a mammogram, compared to 54.9% of those who have a disability.
Barriers to accessing sexual health services include, but are not limited to:
- surgeries that are not wheelchair friendly – a shocking 63% of respondents to the Jo’s Trust survey said their GP was wheelchair accessible
- a lack of hoists and adjustable beds
- previous negative experiences – women with disabilities may have had more interaction with the medical community and bad experiences more generally can mean they are reluctant to go for screening. It’s not uncommon for women to feel they aren’t listened to or taken seriously when they present with illness or disability and no one wants to subject themselves to more of that.
- related to which is staff attitudes, and not seeing disabled women as sexual beings and hence seeing sexual health as a low priority.
“In some cases, women reported being told screening is too complex to arrange and have been told it is not possible or even asked to sign a waiver stating that they do not wish to receive screening.”
– Jo’s Trust
Attitudes and beliefs taint the way people are treated. I’ve had GPs question why I wanted contraception and assume the only reason would be to stop my period. This didn’t happen before I became disabled. And if someone isn’t seen as sexual, then by extension they don’t need to access sexual health services. This way of thinking can block innovative, or just common sense, ways of providing these services.
These solutions might be home visits for people unable to leave their bed, buying a hoist for the GP practice or referring people to a hospital where there are appropriate facilities. It could be having appointments which allow for women with disabilities needing longer or it could just be better training. Sometimes it might be as basic as having an accessible GP practice which really shouldn’t be a big ask. And sometimes it might be even simpler and be a case of including access information on the website. I checked out the online information for my nearest sexual health clinic and there is no mention of access or blue badge parking and that in itself is a barrier than can be easily and cheaply overcome.
Other good practice ideas include having staff that are flexible, that can problem solve and who want to work with the patient to find out what works for them. It’s possible extra reassurance may help, or a “we’ll try it and see what happens and go from there” attitude. For some women, going in and seeing the space may help them to work out adaptations with the staff beforehand. It might also help to have another professional on hand to help.
There are other sexual health barriers that disabled people face, for example, if someone has limited use of their hands, how can their check their breasts/testicles for lumps? Which can make the NHS advice for women who can’t have mammograms that bit more difficult… and certainly adds to the following horrific statistic:
“Disabled women don’t have the same access to screening for breast and genealogical cancers as non-disabled women, and are up to three times as likely to die of breast cancer.”
– Disability Horizons
Unfortunately, this tends to mean the onus is on the woman to keep pushing for screening and be their own advocate… And until things change, one of the most important things we can do is make people aware of the issues and keep talking about them. Hence this blog post!